National Support Services, Disab/Diag

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Programs that offer workshops, discussion groups, activities and other types of training that sensitize participants to people with disabilities, help them experience what it is like to have a disability, and share techniques for positive communication and interaction with people who have disabilities. (AIRS PH-6200.1850 Disability Awareness Programs)

Service Legend
Local Service
Statewide Service: Provides online resources, telehealth, or service at a satellite office.
Nationwide Service: Provides online resources, telehealth or services at a regional/national headquarters location.
Nationwide Provider
30 East 33rd Street
New York, NY 10016
Phone: 800-622-9010
Nationwide Provider
Address:
30 East 33rd Street
New York, NY 10016
Phone: 800-622-9010
Toll Free Phone: 855-653-2273
Fax: 212-689-9261
Email: info@kidney.org
Services Provided:

The National Kidney Foundation is the leading organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease.

Services Include:

  • Information and resources about kidney disease
  • Patient Information Help Line
  • Peer mentor support program
  • Self management app for food choices
Source: MHP-Nationwide
Last Updated: 5/7/2022
Nationwide Provider
302 Jefferson Street, Ste. 110
PO Box 17646
Raleigh, NC 27605
Phone: 919-715-4092
Nationwide Provider
Address:
302 Jefferson Street, Ste. 110
PO Box 17646
Raleigh, NC 27605
Phone: 919-715-4092
TDD: 919-715-4092
Fax: 919-715-4093
Eligibility: Parents of children who are deaf or hard of hearing
Services Provided: Information on communication options, placement, and educational programs for parents of children who are deaf or hard-of-hearing.
Source: MHP-Nationwide
Last Updated: 1/6/2020
Nationwide Provider
8630 Fenton Street, Suite 820
Silver Spring, MD 20910-3819
Phone: 301-587-1788
Nationwide Provider
Address:
8630 Fenton Street, Suite 820
Silver Spring, MD 20910-3819
Phone: 301-587-1788
TDD: 301-810-3182
Fax: 301-587-1791
Email: nad.info@nad.org
Eligibility:

deaf and hard of hearing

Services Provided:

Safeguards the civil rights of deaf and hard of hearing Americans. As a national federation of state associations, individual members, and organizational and corporate affiliates, the advocacy work includes accessibility, education, employment, healthcare, mental health, rehabilitation, technology, telecommunications, and transportation. Website features advocacy information and resources.

Provider Profiles:

NAD Youth Leadership Camp (YLC) is a four-week intensive educational program for high school students. Camp Taloali, Stayton, Oregon.

Source: MHP-Nationwide
Last Updated: 2/24/2022
Nationwide Provider
3417 Volta Place NW
Washington, DC 20007
Phone: 202-337-5220
Nationwide Provider
Address:
3417 Volta Place NW
Washington, DC 20007
Phone: 202-337-5220
TDD: 202-337-5221
Fax: 202-337-8314
Email: info@agbell.org
Eligibility: Individuals who are deaf or hard of hearing.
Services Provided: A resource center on hearing loss and spoken language approaches and related issues. Promotes opportunities and rights of individuals who are deaf or hard of hearing to learn to use, maintain, and improve all aspects of their verbal communication, including their abilities to use residual hearing and process both spoken and written language. Offers scholarship/ financial award opportunities, membership, information, and publications.
Source: MHP-Nationwide
Last Updated: 1/7/2020
Nationwide Provider
PO Box 3355
Gettysburg, PA 17325
Phone: 717-334-7992
Nationwide Provider
Address:
PO Box 3355
Gettysburg, PA 17325
Phone: 717-334-7992
Toll Free Phone: 800-942-2732
Email: asdc@deafchildren.org
Services Provided: Families and professionals committed to educating, empowering, and supporting parents and families of children who are deaf or hard-of-hearing. Helps find meaningful communication options, particularly through the competent use of sign language, in their home, school, or community.
Source: MHP-Nationwide
Last Updated: 1/7/2020
Nationwide Provider
31 Center Dr., MSC 2320
Bethesda, MD 20892
Phone: 800-241-1044
Nationwide Provider
Organization Name: National Institutes of Health
(Show others in Organization)
Address:
31 Center Dr., MSC 2320
Bethesda, MD 20892
Phone: 800-241-1044
TDD: 800-241-1055
Eligibility: communication disorders
Services Provided:

Information specialists provide callers with fact sheets, resources and referrals to other organizations and agencies. Topics include hearing, balance, smell and taste, voice, speech, and language disorders.

Source: MHP-Nationwide
Last Updated: 9/18/2020
Nationwide Provider
42-40 Bell Boulevard, Suite 205
Bayside, NY 11361-2820
Phone: 718-224-2999
Nationwide Provider
Address:
42-40 Bell Boulevard, Suite 205
Bayside, NY 11361-2820
Phone: 718-224-2999
Toll Free Phone: 888-486-8738
Fax: 718-279-9596
Email: support@tourette.org
Services Provided:

A national organization serving children, individuals and families affected by Tourette Syndrome (TS) and other tic disorders. Comprehensive online information includes six online CME/CNE programs, programs on Recognition, Diagnosis & Treatment, and training for Allied Professionals and Educators. The website also contains resources for patients and families.

Find a Provider: Directory of experts in Tourette Syndrome that can be filtered by age group, clinical expertise (specialty), and location.

Tourette Syndrome Centers of Excellence: List of Centers of Excellence in the care of Tourette Association, recognized by the Tourette Association of America as promoting the highest level of care, research, education & training, and advocacy & awareness for these conditions.

Source: MHP-Nationwide
Last Updated: 1/4/2021
Nationwide Provider
500 Montgomery Street, Suite 820
Alexandria, VA 22314
Phone: 703-684-7722
Nationwide Provider
Address:
500 Montgomery Street, Suite 820
Alexandria, VA 22314
Phone: 703-684-7722
TDD: 800-433-5959
Toll Free Phone: 800-969-6642
Fax: 703-684-5968
Email: info@mentalhealthamerica.net
Eligibility: mental health
Services Provided: Programs include: public policy and advocacy at the federal, state, and regional levels; education and outreach with screening tools and research; and information and referral services.
Source: MHP-Nationwide
Last Updated: 1/7/2020
Nationwide Provider
55 East Jackson Blvd., Suite 490
Chicago, IL 60604
Phone: 800-826-3632
Nationwide Provider
Address:
55 East Jackson Blvd., Suite 490
Chicago, IL 60604
Phone: 800-826-3632
Toll Free Phone: 800-826-3632
Fax: 312-642-7243
Eligibility: Contact for specific information.
Services Provided: Educates patients, professionals, and the public concerning the nature of depressive, bipolar disorder (also known as manic depression) or mood disorder. Maintains over 1000 support groups around the country.
Provider Profiles: National
Source: MHP-Nationwide
Last Updated: 1/17/2020
Nationwide Provider
6001 Executive Boulevard, Room 6200, MSC 9663
Bethesda, MD 20892-9663
Phone: 866-615-6464
Nationwide Provider
Organization Name: National Institutes of Health
(Show others in Organization)
Address:
6001 Executive Boulevard, Room 6200, MSC 9663
Bethesda, MD 20892-9663
Phone: 866-615-6464
TDD: 301-443-8431
Toll Free Phone: 866-615-6464
Fax: 301-443-4279
Email: nimhinfo@nih.gov
Languages Spoken: Spanish
Services Provided:

Provides mental health information on the following topics: getting help, statistics, clinical trials, outreach, research, opportunities for funding, and labs at NIMH.

Source: MHP-Nationwide
Last Updated: 9/1/2021
Nationwide Provider
9605 Medical Center Dr Suite 280
Rockville, MD 20850
Phone: 240-403-1901
Nationwide Provider
Address:
9605 Medical Center Dr Suite 280
Rockville, MD 20850
Phone: 240-403-1901
Fax: 240-403-1909
Services Provided: We are a national family-run organization dedicated exclusively to helping children with mental health needs and their families achieve a better quality of life. Provide leadership to develop and sustain a nationwide network of family-run organizations. Focus the passion and cultural diversity of our membership to be a potent force for changing how systems respond to children with mental health needs and their families. Help policy-makers, agencies, and providers become more effective in delivering services and supports that foster healthy emotional development for all children.
Source: MHP-Nationwide
Last Updated: 1/6/2020
Nationwide Provider
P.O. Box 472
State College, PA 16804
Phone: 484-272-7368
Nationwide Provider
Address:
P.O. Box 472
State College, PA 16804
Phone: 484-272-7368
Email: memberinfo@p2pusa.org
Services Provided:

Emotional and informational support for families of children who have special needs, Parent to Parent-USA (P2P-USA) is a national nonprofit organization committed to assuring access and quality in Parent to Parent support across the country. This site highlights state's organizations that have parent to parent support as a core program and are committed to implementing evidence-based practices.

Source: MHP-Nationwide
Last Updated: 8/19/2020
The Arc View on Map
Nationwide Provider
1825 K Street NW, Suite 1200
Washington, DC 20006
Phone: 301-565-3842
Nationwide Provider
Address:
1825 K Street NW, Suite 1200
Washington, DC 20006
Phone: 301-565-3842
Toll Free Phone: 800-433-5255
Fax: 301-565-3843
Services Provided:

A national organization of and for people with developmental disabilities and their families. Website provides information about public policy; insurance products information; publications; discussion groups; employment registry; and links to local chapters and related organizations.

Source: MHP-Nationwide
Last Updated: 3/1/2022
Nationwide Provider
8588 Potter Park Drive, Suite 500
Sarasota, FL 34238
Nationwide Provider
Address:
8588 Potter Park Drive, Suite 500
Sarasota, FL 34238
Toll Free Phone: 800-926-4797
Email: support@pwsausa.org
Services Provided:

Promotes and funds research, provides education, and offers support to enhance the quality of life of those impacted by Prader-Willi syndrome. 

Source: MHP-Nationwide
Last Updated: 8/23/2021
Nationwide Provider
1963 McCraren Rd.
Highland Park, IL 60035
Nationwide Provider
Address:
1963 McCraren Rd.
Highland Park, IL 60035
Toll Free Phone: 877-720-2192
Email: paf@pafoundation.com
Services Provided:

Mission: Propionic Acidemia Foundation is dedicated to finding improved treatments and a cure for Propionic Acidemia by funding research and providing information and support to families and medical professionals.

Organization offers educational resources for families and patients, a patient registry, conferences and trainings, online support groups, and more.

Source: MHP-Nationwide
Last Updated: 6/8/2020
Nationwide Provider
4550 Montgomery Avenue, Suite 1100 N
Bethesda, MD 20814
Phone: 301-951-4422
Nationwide Provider
Address:
4550 Montgomery Avenue, Suite 1100 N
Bethesda, MD 20814
Phone: 301-951-4422
Toll Free Phone: 800-344-4823
Fax: 301-951-6378
Services Provided: The mission of the Cystic Fibrosis (CF) Foundation is to cure cystic fibrosis and provie all people with CF the opportunity to lead long, fulfilling lives.

The CF Foundation funds research and drug development and provides CF-related resources for families and medical providers.

[https://www.cff.org/Assistance-Services/About-Compass/What-Is-Compass/ Compass] is a personalized one-on-one service to help with the insurance, financial, legal, and other issues faced by people living with CF, their families, and their care teams.

The [https://www.cff.org/ccd/ CF Care Center] finder is a web-based location finder for cystic fibrosis accredited care centers nationwide. The Cystic Fibrosis Foundation provides funding for and accredits more than 110 cystic fibrosis care centers and 55 affiliate programs nationwide, including 96 programs for treating adults with CF.
Source: MHP-Nationwide
Last Updated: 2/7/2020
Nationwide Provider
13140 Coit Road, Suite 517
Dallas, TX 75240
Phone: 214-570-9099
Nationwide Provider
Address:
13140 Coit Road, Suite 517
Dallas, TX 75240
Phone: 214-570-9099
Toll Free Phone: 800-535-3646
Fax: 214-570-8811
Email: contactCCA@ccakids.com
Eligibility:

People with facial differences and their families

Services Provided:

Addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions. Annual Family Retreat & Educational Symposium is held each June to provide an opportunity to interact with others who have endured similar experiences.

Source: MHP-Nationwide
Last Updated: 5/7/2022
Nationwide Provider
Albany Medical Center, MC-28
Albany Medical Center
Delmar, NY 12054
Phone: 518-262-5079
Nationwide Provider
Address:
Albany Medical Center, MC-28
Albany Medical Center
Delmar, NY 12054
Phone: 518-262-5079
Fax: 518-262-5528
Email: oleyfoundation@gmail.com
Languages Spoken: Spanish
Services Provided:

Provides, information and support for parenteral nutrition consumers (HPN or home IV-fed patients) to improve their health and quality of life. Also offers a national list of Donated Equipment and Supplies and virtual support groups.

Source: MHP-Nationwide
Last Updated: 11/13/2020
Nationwide Provider
3015 East New York Street, Suite A2 #285
Aurora, IL 60504
Nationwide Provider
Address:
3015 East New York Street, Suite A2 #285
Aurora, IL 60504
Toll Free Phone: 800-432-6435
Fax: 630-978-7408
Email: info@angelman.org
Services Provided:

Provides resources and support for individuals and families living with Angelman Syndrome. Offers a Family Resource Team to help find needed resources; educational programs and Angelman Syndrome Resources. 

Source: MHP-Nationwide
Last Updated: 2/24/2022
Nationwide Provider
4200 Cantera Drive, Suite 106
Warrenville, IL 60555
Phone: 630-836-8200
Nationwide Provider
Address:
4200 Cantera Drive, Suite 106
Warrenville, IL 60555
Phone: 630-836-8200
Toll Free Phone: 800-362-4423
Fax: 630-836-8181
Email: contactus@magicfoundation.org
Services Provided:

Provides support services for the families of children afflicted with a wide variety of chronic and/or critical disorders, syndromes and diseases that affect a child's growth. Website includes information on a variety of Endocrine Disorders.

Provider Profiles:

An organization of parents who have children with endocrine disorders.

Source: MHP-Nationwide
Last Updated: 8/2/2021
Nationwide Provider
8161 Normandale Blvd.
Bloomington, MN 55437
Phone: 952-838-9000
Nationwide Provider
Address:
8161 Normandale Blvd.
Bloomington, MN 55437
Phone: 952-838-9000
Toll Free Phone: 800-537-2237
Services Provided: Champions for children with disabilities, Parent Advocacy Coalition for Educational Rights, PACER Center expands opportunities and enhances the quality of life of children and young adults with disabilities and their families. PACER is staffed primarily by parents of children with disabilities and works in coalition with 18 disability organizations. A significant Learning Center, Resources, and specifically for Students and Young Adults.
Source: MHP-Nationwide
Last Updated: 1/7/2020
Nationwide Provider
6512 23rd Ave NW, Unit 213
Seattle, WA 98117
Phone: 206-297-6368
Nationwide Provider
Address:
6512 23rd Ave NW, Unit 213
Seattle, WA 98117
Phone: 206-297-6368
Fax: 509-752-6789
Email: emilyholl@siblingsupport.org
Services Provided:

A national program dedicated to the interests of brothers and sisters of people with special health and developmental needs.

Provider Profiles:

A Kindering Center program

Source: MHP-Nationwide
Last Updated: 2/2/2021
Nationwide Provider
161 North Clark Street Ste 3550
Chicago, IL 60601
Nationwide Provider
Address:
161 North Clark Street Ste 3550
Chicago, IL 60601
Toll Free Phone: 800-572-1717
Email: mda@mdausa.org
Services Provided:

A voluntary health agency that works to combat muscular dystrophy, amyotrophic lateral sclerosis (ALS), and related muscle-debilitating diseases. The organization is committed to finding treatments and cures while providing a comprehensive program to empower families with support to help them thrive and stay independent including summer camps for kids, peer support, equipment resources and more. Related volunteer opportunities available.COVID-19 Update: following all CDC and state guidelines.

  • Voluntary Health Organizations
  • Assistive Technology Expense Assistance
  • Health/Disabilities Related Volunteer Opportunities
  • Therapeutic Camps
  • Health/Disability Related Support Groups
Source: MHP-Nationwide
Last Updated: 4/22/2022
Nationwide Provider
5420 S. Quebec Street, Suite 135
Greenwood Village, CO 80111
Phone: 303-794-1182
Nationwide Provider
Address:
5420 S. Quebec Street, Suite 135
Greenwood Village, CO 80111
Phone: 303-794-1182
Fax: 303-322-5550
Services Provided:

The SPD Foundation offers online courses, resources, advocacy, and support groups for professionals, parents, and others interested in helping individuals with Sensory Processing Disorder.

Source: MHP-Nationwide
Last Updated: 6/8/2020
Nationwide Provider
PO Box 4067
Parker, CO 80134
Nationwide Provider
Address:
PO Box 4067
Parker, CO 80134
Eligibility: Invisible disabilities
Services Provided: The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Online support group community.
Source: MHP-Nationwide
Last Updated: 1/6/2020
Nationwide Provider
4340 East West Highway, Suite 905
Bethesda, MD 20814
Phone: 301-202-3811
Nationwide Provider
Address:
4340 East West Highway, Suite 905
Bethesda, MD 20814
Phone: 301-202-3811
TDD: 888-598-3789
Fax: 301-202-3813
Services Provided: Education, research, support and advocacy for hydrocephalus.
Source: MHP-Nationwide
Last Updated: 1/6/2020
Nationwide Provider
115 E. 23rd St., 9th Floor
New York, NY 10010
Nationwide Provider
Organization Name: Psychology Today
(Show others in Organization)
Address:
115 E. 23rd St., 9th Floor
New York, NY 10010
Services Provided:

National state-based database of mental health professionals. Detailed professional listings for Psychologists, Psychiatrists, Therapists, Counselors, Group Therapy and Treatment Centers in the United States and Canada.

Search by city, insurance, issues, sexuality, gender, age, language, faith, types of therapy, online therapy, psychiatrists, treatment centers, and support groups.

Provider Profiles:

Psychology Today's Therapy Directory is run here Sussex Directories.

Source: MHP-Nationwide
Last Updated: 8/31/2020
Nationwide Provider
Haworth Hall, Room 313
1200 Sunnyside Avenue
Lawrence, KS 66045-7534
Phone: 785-864-7600
Nationwide Provider
Organization Name: University of Kansas
(Show others in Organization)
Address:
Haworth Hall, Room 313
1200 Sunnyside Avenue
Lawrence, KS 66045-7534
Phone: 785-864-7600
Fax: 785-864-7605
Services Provided: The Beach Center on Disability is a multidisciplinary research and training center committed to making a significant and sustainable positive difference in the quality of life of individuals and families affected by disability and the professionals who support them. Internationally-recognized leaders in research on and interventions to promote the self-determination of children, youth, and adults with (and without) disabilities.
Provider Profiles: Based at the University of Kansas.
Source: MHP-Nationwide
Last Updated: 1/6/2020
Nationwide Provider
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06810
Phone: 203-744-0100
Nationwide Provider
Organization Name: National Organization for Rare Disorders
(Show others in Organization)
Address:
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06810
Phone: 203-744-0100
Toll Free Phone: 800-999-6673
Fax: 203-263-9938
Eligibility:

Persons with a rare disease and in financial need.

Services Provided:

Provides assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. Programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials.

Source: MHP-Nationwide
Last Updated: 6/17/2021
Nationwide Provider
12 Hurley Avenue
Kingston, NY 12401
Phone: 845-331-4336
Nationwide Provider
Address:
12 Hurley Avenue
Kingston, NY 12401
Phone: 845-331-4336
Email: info@thenadd.org
Eligibility: Co-existing intellectual/developmental disability (IDD) and mental health conditions or mental illness (MI)
Services Provided: An advocacy organization for individuals with dual diagnosis. Also offers training and support for professionals working with these individuals. Membership options for professionals, individuals, and organizations.

[https://thenadd.org/our-certificants/ List of Certificants and Accredited Organizations]
Source: MHP-Nationwide
Last Updated: 3/6/2020
Nationwide Provider
Nationwide Provider
Organization Name: Childhood Anxiety Network
(Show others in Organization)
Address:
Email: info@selectivemutism.org
Services Provided:

SMA, part of the Childhood Anxiety Network, is a nonprofit organization dedicated to providing information, resources and support to those impacted by a child with the anxiety disorder known as Selective Mutism (SM).

SMA is the nation’s premier resource for information on SM. Provides a network of professionals, families and affected individuals across the world who understand the struggle of living in silence.

SMA Support Groups by State: list of SMA support groups.

Find a Treating Professional: Directory of professionals that have joined the SMA community.

Source: MHP-Nationwide
Last Updated: 8/24/2020
Nationwide Provider
8701 Georgia Ave., Suite Unit 412
Silver Spring, MD 20910
Phone: 240-485-1001
Nationwide Provider
Address:
8701 Georgia Ave., Suite Unit 412
Silver Spring, MD 20910
Phone: 240-485-1001
Services Provided: ADAA is a national nonprofit organization dedicated to the prevention, treatment, and cure of anxiety, OCD, PTSD, depression, and related disorders and to improving the lives of all people who suffer from them.
Source: MHP-Nationwide
Last Updated: 1/6/2020
Nationwide Provider
New Brunswick, NJ
Phone: 877-914-6662 Crisis Line: 877-914-6662
Nationwide Provider
Organization Name: Rutgers' University Behavioral Health Care
(Show others in Organization)
Address:
New Brunswick, NJ
Phone: 877-914-6662
Crisis Line: 877-914-6662
Toll Free Phone: 877-914-6662
Languages Spoken: Spanish
Eligibility: Mothers of children with special needs
Services Provided: 24/7 peer-support helpline for mothers of children with special needs. Offers peer support, clinical assessment, database of trained service providers, support groups.
Source: MHP-Nationwide
Last Updated: 1/6/2020
Nationwide Provider
108 NE 2nd St
PO Box 510
Concordia, MO 64020
Phone: 660-463-1355
Nationwide Provider
Address:
108 NE 2nd St
PO Box 510
Concordia, MO 64020
Phone: 660-463-1355
Toll Free Phone: 866-303-2279
Email: info@fabry.org
Services Provided: Information about Fabry disease, support group, discussion page, information about research, links to resources, and more.
Source: MHP-Nationwide
Last Updated: 1/31/2020
Nationwide Provider
4301 Connecticut Ave. N.W., Suite 404
Washington, DC 20008
Phone: 800-651-9131
Nationwide Provider
Address:
4301 Connecticut Ave. N.W., Suite 404
Washington, DC 20008
Phone: 800-651-9131
Email: info@fabrydisease.org
Services Provided:

Information about Fabry disease, research and clinical trials information, funding programs, and more. Programs, include:

  • Annual conference
  • Family camp
  • Personal support
  • Research and educational information
Source: MHP-Nationwide
Last Updated: 8/13/2020
Nationwide Provider
Cambridge, MA
Phone: 617-768-9000
Nationwide Provider
Organization Name: Sanofi Genzyme
(Show others in Organization)
Address:
Cambridge, MA
Phone: 617-768-9000
Toll Free Phone: 800-745-4447 x3
Email: info@careconnectpss.com
Languages Spoken: Spanish
Eligibility: For patients and healthcare professionals
Services Provided:

CareConnectPSS: Offering care management by the Sanofi Genzyme drug company. Information about Fabry disease, a genetic disorder known as lysosomal storage disorders, from Sanofi Genzyme, a biotech company.

Source: MHP-Nationwide
Last Updated: 9/22/2020
Nationwide Provider
40 York Road, 4th Floor
Baltimore, MD 21204
Phone: 410-296-0232
Nationwide Provider
Address:
40 York Road, 4th Floor
Baltimore, MD 21204
Phone: 410-296-0232
Fax: 410-321-5069
Email: info@interdys.org
Services Provided:

Provides information and resources about dyslexia, including handbooks, annual conference, scholarships for teachers and for parents to attend conference, listing of other grants, and provider lists by state.

Source: MHP-Nationwide
Last Updated: 2/23/2022
Nationwide Provider
900 East Hill Ave, Suite 390
Knoxville, TN 37915
Nationwide Provider
Organization Name: Amputee Coalition
(Show others in Organization)
Address:
900 East Hill Ave, Suite 390
Knoxville, TN 37915
Toll Free Phone: 888-267-5669
Eligibility: Ages 10-17 who have limb loss or limb differences.
Services Provided:

Resources and support for individuals with limb loss and their families. Advocacy information and resources for state and national advocacy.

Paddy Rossbach Youth Camp: A 6-day traditional summer camp experience for children with limb loss and limb difference to increase self-confidence and self-esteem through a traditional and supportive summer camp experience. The Amputee Coalition arranges travel plans for all camp attendees. Cost: none! thanks to sponsors and donors. Opportunities for camp counselors ages 18-19 and age 20 and above.

Provider Profiles:

2016 dates July 8 - 16.

Source: MHP-Nationwide
Last Updated: 9/22/2020
Nationwide Provider
Chicago, IL 60610-3131
Phone: 312-274-2650
Nationwide Provider
Address:
Chicago, IL 60610-3131
Phone: 312-274-2650
Email: info@headaches.org
Services Provided: With the aim to cure headache, and to end its pain and suffering, the NHF has collected the most comprehensive information on headache and migraine on their website. Head Wise magazine provides in depth articles on advances in treatment and understanding of these complex diseases. NHF also funds headache research.
Source: MHP-Nationwide
Last Updated: 1/7/2020
Nationwide Provider
611 Rockville Pike, Suite 150
Rockville, MD 20852
Phone: 204-246-7140
Nationwide Provider
Address:
611 Rockville Pike, Suite 150
Rockville, MD 20852
Phone: 204-246-7140
Email: info@madisonhouseautism.org
Eligibility:

Autism

Services Provided:

Advocates for adults with autism and their families. Helps those with autism make choices, live more independently, hold jobs, feel connected to their communities, and become participating members of society.

Source: MHP-Nationwide
Last Updated: 8/10/2021
Nationwide Provider
12180 South 300 East Unit 532
PO Box 532
Draper, UT 84020-0532
Nationwide Provider
Address:
12180 South 300 East Unit 532
PO Box 532
Draper, UT 84020-0532
Toll Free Phone: 888-928-8476
Eligibility: autism
Services Provided: A nonprofit with a network of world-renowned professionals with expertise in Autism, Asperger Syndrome, and other related disorders. US Autism & Asperger Association hosts a compendious world conference in the United States each year, establishes standards for Autism and Asperger Syndrome training, and aligns with local community resources to offer support for the entire Autism and Asperger communities.
Provider Profiles: A resource-rich website.
Source: MHP-Nationwide
Last Updated: 1/7/2020
Nationwide Provider
4600 Devitt Drive
Cincinnati, OH 45246
Phone: 800-818-7388
Nationwide Provider
Address:
4600 Devitt Drive
Cincinnati, OH 45246
Phone: 800-818-7388
Toll Free Phone: 800-818-7388
Email: admin@rettsyndrome.org
Services Provided: An organization comprised of parents and friends of those diagnosed with Rett syndrome, providing the latest medical information, aggressively funding the most promising research, offering meaningful support, raising public awareness and advocating for all living with Rett syndrome. Lists resources and clinics by state, national resources, and clinical trials. Resources include: Care Guides, Communication, Adaptive Equipment and Funding, School and Day Programs, Adolescence, Planning for the Future.
Source: MHP-Nationwide
Last Updated: 1/7/2020
Nationwide Provider
30 Tower Lane
Avon, CT 06001
Phone: 860-753-2357
Nationwide Provider
Address:
30 Tower Lane
Avon, CT 06001
Phone: 860-753-2357
Toll Free Phone: 800-223-8355
Fax: 860-676-8337
Services Provided:

A family support organization that exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lives. Toll free help lines, Ask the Expert emails, Connect with a Family, and more.

Additional Family Resources: Medical Cards, Family Map, CoRDS Registry, CdLS Discussion Board

Provider Profiles:

M - F 8:30 - 5 ET

Source: MHP-Nationwide
Last Updated: 10/28/2020
Family Voices View on Map
Nationwide Provider
PO Box 37188
Albuquerque, NM 87176
Phone: 505-872-4774
Nationwide Provider
Address:
PO Box 37188
Albuquerque, NM 87176
Phone: 505-872-4774
Toll Free Phone: 888-835-5669
Fax: 505-872-4780
Services Provided: Family Voices is a national, nonprofit, family-led organization promoting quality health care for all children and youth, particularly those with special health care needs. Working with family leaders and professional partners at the local, state, regional, and national levels since 1992, Family Voices has brought a respected family perspective to improving health care programs and policies and ensuring that health care systems include, listen to, and honor the voices of families.
Provider Profiles: Family Voices does not provide financial aid and is not a direct service provider. Contact Family Voices in your state.
Source: MHP-Nationwide
Last Updated: 1/6/2020
Nationwide Provider
201 Chicago Avenue, Unit 200
Minneapolis, MN 55415
Nationwide Provider
Address:
201 Chicago Avenue, Unit 200
Minneapolis, MN 55415
Eligibility: For patients or caregivers, advocacy groups, health care providers, and supporters.
Services Provided: CNF Family Support and Empowerment Program (FSEP) offers families a direct connection with an experienced, compassionate Peer Support Specialist to help navigate the journey of disease diagnosis, treatment, and management for a child living with a neurologic condition. Includes: Transition of Care, Infantile Spasms Awareness, Respite Care, Sudden Unexpected Death in Epilepsy, Grants and Scholarships, Webinars
Provider Profiles: National, web-based locator for services
Source: MHP-Nationwide
Last Updated: 1/7/2020
Nationwide Provider
4301 Connecticut Avenue NW, Suite 160
Washington, DC 20008-2326
Nationwide Provider
Organization Name: National Environmental Education Foundation (NEEF)
(Show others in Organization)
Address:
4301 Connecticut Avenue NW, Suite 160
Washington, DC 20008-2326
Eligibility: Pediatric asthma, diabetes or obesity
Services Provided:

Providing resources to healthcare providers on environmental health concerns and benefits. Asthma study,"Integrating environmental management of asthma into pediatric health care."

Source: MHP-Nationwide
Last Updated: 12/11/2020
Nationwide Provider
2350 West Higgins Road
Hoffman Estates, IL 60169
Phone: 847-885-6147
Nationwide Provider
Organization Name: Down Syndrome Achievement Centers
(Show others in Organization)
Address:
2350 West Higgins Road
Hoffman Estates, IL 60169
Phone: 847-885-6147
Email: info@gigisplayhouse.org
Eligibility:

Individuals with Down syndrome, their families and the community

Services Provided:

Provides free educational, therapeutic-based and career development programs for individuals with Down syndrome, their families and the community, through a replicable playhouse model. Multiple locations throughout the U.S.

Source: MHP-Nationwide
Last Updated: 5/7/2022
Nationwide Provider
6 East 39th Street, Suite 1204
New York, NY 10016
Phone: 212-647-7544
Nationwide Provider
Address:
6 East 39th Street, Suite 1204
New York, NY 10016
Phone: 212-647-7544
Toll Free Phone: 800-273-8255
Eligibility: young adults with suicidal thoughts
Services Provided: Suicide prevention and mental illness; equipping America’s teens and young adults with the skills and support they need to grow into healthy, thriving adults.
Help schools evaluate and strengthen their mental health, substance abuse and suicide prevention programs and systems to safeguard individual and community health.
Develop expert resources and create powerful partnerships to ensure more teens and young adults get access to the resources and support they need to navigate life’s challenges.
Educate and equip students, families and communities to know when and how to support others who are in distress or struggling with a mental health issue.
Source: MHP-Nationwide
Last Updated: 1/7/2020
Nationwide Provider
10586 West Pico Boulevard, Unit 196
Los Angeles, CA 90064
Phone: 260-225-3736
Nationwide Provider
Address:
10586 West Pico Boulevard, Unit 196
Los Angeles, CA 90064
Phone: 260-225-3736
Email: info@kesem.org
Eligibility:

children with parents with cancer

Services Provided:

Kesem is a nationwide community, driven by passionate college student leaders, that supports children through and beyond their parent’s cancer. Offering innovative, fun-­filled programs that foster a lasting community, we aim to ensure that every child impacted by a parent’s cancer is never alone.

Provider Profiles:

Camp locator on website

Source: MHP-Nationwide
Last Updated: 4/7/2022
Nationwide Provider
KS
Phone: 202-448-1448
Nationwide Provider
Organization Name: Kansas University
(Show others in Organization)
Address:
KS
Phone: 202-448-1448
Email: JHJP@dcqualitytrust.org
Eligibility: Persons with Developmental Disabilities and their families
Services Provided: Works to ensure that input is obtained from all relevant stakeholder groups including older adults, people with intellectual and developmental disabilities (I/DD), family members, advocates, professionals and providers.
Features a locator map to identify Developmental Disabilities statutes, presentations, and policy discussions. Resources library: Guardianship and Alternatives, Education and Transition Planning
Provider Profiles: A project of Quality Trust for Individuals with Disabilities, Burton Blatt Institute, Syracuse University, and Life Span Institute, University of Kansas (housing the Beach Center on Disability and the Kansas University Center on Developmental Disabilities)
Source: Medical Home Portal
Last Updated: 6/11/2020
Nationwide Provider
4301 Wilson Boulevard, Suite 300
Arlington, VA 22203
Phone: 703-524-7600
Nationwide Provider
Address:
4301 Wilson Boulevard, Suite 300
Arlington, VA 22203
Phone: 703-524-7600
Toll Free Phone: 800-950-6264
Email: info@nami.org
Eligibility:

Available to all.

Services Provided:

NAMI, the National Alliance on Mental Illness, is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness. Provides information about NAMI groups in all states, updated information about illnesses and medications, and sends out literature.

Source: MHP-Nationwide
Last Updated: 3/29/2021
Nationwide Provider
Nationwide Provider
Organization Name: Institute of Genetic Medicine, University of Newcastle upong Tyne
(Show others in Organization)
Address:
Email: info@treat-nmd.org
Services Provided: A global neuromuscular diseases organization bringing together leading specialists, patient groups and industry representatives to ensure preparedness for the trials and therapies of the future while promoting best practice today.
Provider Profiles: University of Newcastle upon Tyne, United Kingdom
Institute of Genetic Medicine
University of Newcastle upon Tyne
International Centre for Life
Newcastle upon Tyne
NE1 3BZ
United Kingdom

T: +44 (0)191 241 8839
Source: MHP-Nationwide
Last Updated: 1/6/2020
CureDuchenne View on Map
Nationwide Provider
1400 Quail Street, Suite 110
Newport Beach, CA 92660
Phone: 949-872-2552
Nationwide Provider
Address:
1400 Quail Street, Suite 110
Newport Beach, CA 92660
Phone: 949-872-2552
Email: info@cureduchenne.org
Services Provided:

Provides programs to improve the lives of those affected by Duchenne. Provides free education, workshops, and webinars. Provides a web locator for certified therapy services.

Source: MHP-Nationwide
Last Updated: 8/10/2021
Nationwide Provider
PO Box 737
Owingsville, KY 40360
Nationwide Provider
Address:
PO Box 737
Owingsville, KY 40360
Email: info@g1dfoundation.org
Services Provided:

Improves lives in the Glut1 Deficiency community through its mission of:

  • increased awareness
  • improved education
  • advocacy for patients and families
  • support and funding for research
Source: MHP-Nationwide
Last Updated: 8/19/2021
Nationwide Provider
120 Wall Street, 16th Floor
New York, NY 10005-3904
Phone: 212-344-6633
Nationwide Provider
Address:
120 Wall Street, 16th Floor
New York, NY 10005-3904
Phone: 212-344-6633
Toll Free Phone: 800-323-7938
Fax: 212-747-0004
Email: info@ctf.org
Services Provided: Ending neurofibromatosis through research. Patient Engagement program, meaning the inclusion of patient representatives in NF research, and the view that people with NF are not just subjects, but are health care consumers who have a role in managing their care, directing their health outcomes, and accelerating therapies for the entire NF community. A NF Clinic Network by state.
Provider Profiles: NF Camp is the annual summer camp of the Children's Tumor Foundation, dedicated to teens and young adults living with neurofibromatosis (NF). For over 20 years we have hosted this week-long experience for teens and young adults ages 12 to 25. NF Camp takes place on the third or fourth week of July (6 nights/6 days) in Salt Lake City, Utah. Application on CTF website.
Source: MHP-Nationwide
Last Updated: 1/6/2020
Nationwide Provider
1004 A O'Reilly Avenue
San Francisco, CA 94129
Phone: 415-800-7777
Nationwide Provider
Address:
1004 A O'Reilly Avenue
San Francisco, CA 94129
Phone: 415-800-7777
Toll Free Phone: 866-968-6642
Email: info@myotonic.org
Services Provided:

Delivering comprehensive support resources, and driving research to accelerate the discovery of DM therapies. A digital library of educational videos. Find a doctor nationwide locator. Find a support group, including a virtual group. Anesthesia guidelines. Founded by families with DM seeking to help one another.

Provider Profiles:

AKA Myotonic Dystrophy Foundation

Source: MHP-Nationwide
Last Updated: 11/4/2020
Nationwide Provider
8737 Colesville Road, Suite 400
Silver Spring, MD 20910-4487
Phone: 301-562-9890
Nationwide Provider
Address:
8737 Colesville Road, Suite 400
Silver Spring, MD 20910-4487
Phone: 301-562-9890
Toll Free Phone: 800-225-6872
Fax: 301-562-9870
Email: info@tsalliance.org
Services Provided:

Provides support and resources to improve the lives of people with tuberous sclerosis complex (TCS). Website identifies TSC Clinics, a TSC Clinic Screening Tool, and a locator for local resources.

Source: MHP-Nationwide
Last Updated: 2/24/2022
Nationwide Provider
P.O. Box 643
Erie, CO 80516
Phone: 831-200-4227
Nationwide Provider
Address:
P.O. Box 643
Erie, CO 80516
Phone: 831-200-4227
Email: info@22qfamilyfoundation.org
Services Provided:

Dedicated to raising awareness for 22q11.2 Deletion Syndrome while connecting, supporting and offering accurate information to families affected by the disorder. Provides a locator map for family connections, support groups and clinics.

Provider Profiles:

Executive Director Lindsey Garcia

Source: MHP-Nationwide
Last Updated: 8/19/2021
Nationwide Provider
9000 Rockville Pike
Bethesda, MD 20982
Nationwide Provider
Organization Name: National Institutes of Health Common Fund
(Show others in Organization)
Address:
9000 Rockville Pike
Bethesda, MD 20982
Toll Free Phone: 844-746-4836
Email: UDN@hms.harvard.edu
Services Provided:

Undiagnosed Diseases Network (UDN) is a research study that seeks to provide answers for patients and families affected by mysterious conditions. Clinical sites located throughout the U.S.

Source: MHP-Nationwide
Last Updated: 5/7/2022
Nationwide Provider
1200 Eton Court, NW, Third Floor
Washington, DC 20007
Phone: 202-785-4585
Nationwide Provider
Address:
1200 Eton Court, NW, Third Floor
Washington, DC 20007
Phone: 202-785-4585
Toll Free Phone: 800-666-6327
Services Provided:

The leading voice and resource of the Fetal Alcohol Spectrum Disorders (FASD) community, and committed to the prevention of prenatal exposure to alcohol, drugs, and other substances known to harm fetal development, and to supporting individuals, families, and communities living with Fetal Alcohol Spectrum Disorders (FASDs) and other preventable intellectual/ developmental disabilities.

Source: MHP-Nationwide
Last Updated: 2/2/2021
Nationwide Provider
4068 Mount Royal Boulevard, Suite 224B
Allison Park, PA 15101
Phone: 412-341-1515
Nationwide Provider
Address:
4068 Mount Royal Boulevard, Suite 224B
Allison Park, PA 15101
Phone: 412-341-1515
Fax: 412-344-0224
Email: info@LDAAmerica.org
Eligibility:

People with disabilities, their parents, teachers, and other professionals

Services Provided:

Provides support to people with learning disabilities, their parents, teachers and other professionals with cutting edge information on learning disabilities, practical solutions, and a comprehensive network of resources.

Source: MHP-Nationwide
Last Updated: 4/26/2022
Nationwide Provider
PO Box 103
Denver, PA 17517
Phone: 800-939-1019
Nationwide Provider
Address:
PO Box 103
Denver, PA 17517
Phone: 800-939-1019
Email: info@add.org
Eligibility:

Individuals with ADHD and their families

Services Provided: An international non-profit organization founded twenty-five years ago to help adults with Attention Deficit/Hyperactivity Disorder (ADHD) lead better lives. This volunteer-run organization provides information and resources exclusively for and about adult ADHD.

  • Specialized Information and Referral
  • Health/Disability Related Support Groups
Source: Nationwide Suggest Providers Queue
Last Updated: 6/3/2021
Autism Speaks View on Map
Nationwide Provider
1 East 33rd Street, 4th Floor
New York, NY 10016
Phone: 888-772-9050
Nationwide Provider
Address:
1 East 33rd Street, 4th Floor
New York, NY 10016
Phone: 888-772-9050
Toll Free Phone: 888-288-4762
Email: familyservices@autismspeaks.org
Languages Spoken: Spanish
Services Provided: Provides the latest autism science and information, funding research into the causes, prevention, treatments and cures for autism, awareness of autism spectrum disorders, advocacy for the needs of individuals with autism and their families and an online store.COVID-19 UPDATE: Offering 30+ hours of free online video learning resources; visit website for programming.

  • Specialized Information and Referral
  • Disease/Disability Information
Source: Nationwide Suggest Providers Queue
Last Updated: 4/7/2022
Cancer Care View on Map
Nationwide Provider
275 Seventh Avenue 22nd Floor
New York, NY 10001
Phone: 212-712-8400
Nationwide Provider
Address:
275 Seventh Avenue 22nd Floor
New York, NY 10001
Phone: 212-712-8400
Toll Free Phone: 800-813-4673
Fax: 212-712-8495
Email: info@cancercare.org
Services Provided: Provides online, telephone, and in-person counseling, health/disability related support groups, disease/disability information, and medical care expense assistance. All services are provided by oncology social workers and world-leading cancer experts.COVID-19 UPDATE: All services are available via telephone and online. Please call with any questions.

  • Health/Disability Related Support Groups
  • Medical Care Expense Assistance
  • Disease/Disability Information
Source: Nationwide Suggest Providers Queue
Last Updated: 4/7/2022
Nationwide Provider
733 Third Avenue Ste 510
New York, NY 10017
Phone: 800-932-2423
Nationwide Provider
Address:
733 Third Avenue Ste 510
New York, NY 10017
Phone: 800-932-2423
Toll Free Phone: 888-694-8872
Email: info@crohnscolitisfoundation.org
Eligibility:

Crohn's and Colitis patients, their families and medical professionals.

Services Provided:

The Crohn's & Colitis Foundation is a non-profit, volunteer-driven organization dedicated to finding the cures for Crohn's Disease and ulcerative colitis. Provides online and telephone access to disease educational materials, support groups, physician referrals and other resources.

COVID-19 UPDATE: Following all CDC and State guidelines. Please contact to verify if support group is meeting online or in person.

  • Specialized Information and Referral
  • Disease/Disability Information
  • Research Funds
  • Internet Information Resources
  • Health/Disability Related Support Groups
Source: Nationwide Suggest Providers Queue
Last Updated: 4/7/2022
Nationwide Provider
PO Box 268
Lakewood, CA 90714
Phone: 888-970-0777
Nationwide Provider
Address:
PO Box 268
Lakewood, CA 90714
Phone: 888-970-0777
Toll Free Phone: 888-970-0777
Fax: 562-920-5240
Email: director@fivepminus.org
Eligibility:

Parents and health care providers of children with Cri Du Chat syndrome.

Services Provided: Provides disease/disability information and support groups, and comprehensive resources for accurate, up-to-date information, support, and acceptance to maximize the quality of life for individuals with 5p- and their families. This syndrome is a chromosomal deletion disorder that results in intellectual and developmental issues in children. Also supports five Regional Family Get-Togethers per year.COVID-19 UPDATE: Following all CDC and State guidelines.

  • Health/Disability Related Support Groups
  • Disease/Disability Information
Source: Nationwide Suggest Providers Queue
Last Updated: 4/7/2022
Nationwide Provider
110 West Road Ste 300
Towson, MD 21204
Phone: 800-296-4433
Nationwide Provider
Address:
110 West Road Ste 300
Towson, MD 21204
Phone: 800-296-4433
Fax: 410-321-9165
Email: frontdesk@primaryimmune.org
Services Provided: A national patient organization dedicated to improving the diagnosis, treatment, and quality of life of persons with primary immunodeficiency diseases through advocacy, education, support groups, research, and information sharing.COVID-19 HOURS: Following all CDC and State guidelines.

  • Disease/Disability Information
  • Health/Disability Related Support Groups
Source: MHP-Nationwide
Last Updated: 4/7/2022
Nationwide Provider
16880 Middlebelt Road Ste 4
Livonia, MI 48154
Phone: 734-522-7200
Nationwide Provider
Address:
16880 Middlebelt Road Ste 4
Livonia, MI 48154
Phone: 734-522-7200
Fax: 734-522-0200
Email: interact@ihsinfo.org
Eligibility:

For those needing information on hearing loss, hearing aids, and hearing specialists.

Services Provided:

Provides a consumer kit which includes a booklet on hearing loss and hearing aids and a listing of qualified hearing instrument specialists in the area.

  • Hearing Aids
Source: Nationwide Suggest Providers Queue
Last Updated: 4/7/2022
Nationwide Provider
623 West 38th Street Ste 300
Austin, TX 78705
Phone: 877-236-8820
Nationwide Provider
Address:
623 West 38th Street Ste 300
Austin, TX 78705
Phone: 877-236-8820
Email: livestrong@livestrong.org
Languages Spoken: Spanish
Eligibility:

Cancer patients

Services Provided: Provides resources for the cancer community to address the unmet needs of cancer survivors and develops evidence-based solutions to address both the common and unique problems survivors are facing around the world. Offers a free prescription drug discount card.COVID-19 Update: following all CDC and state guidelines.

  • Specialized Information and Referral
  • Prescription Drug Discount Cards
Source: Nationwide Suggest Providers Queue
Last Updated: 4/7/2022
Nationwide Provider
35 Halsey Street 4th Floor
Center for Parent Information and Resources
Newark, NJ 07102
Phone: 973-642-8100
Nationwide Provider
Address:
35 Halsey Street 4th Floor
Center for Parent Information and Resources
Newark, NJ 07102
Phone: 973-642-8100
Email: debra.jennings@spanadvocacy.org
Eligibility:

Those who serve families of children with disabilities

Services Provided: Website serves as a central resource of information and products to the community of Parent Training Information (PTI) Centers and the Community Parent Resource Centers (CPRCs), so that they can focus their efforts on serving families of children with disabilities.COVID-19 UPDATE: Continues to offer services through their website 24/7.

  • Planning/Coordinating/Advisory Groups
Source: MHP-Nationwide
Last Updated: 4/7/2022
Nationwide Provider
220 North Green Street
Chicago, IL 60607
Phone: 312-262-6897
Nationwide Provider
Address:
220 North Green Street
Chicago, IL 60607
Phone: 312-262-6897
Toll Free Phone: 888-375-7767
Email: hello@anad.org
Services Provided: A non-profit organization working in the areas of support, awareness, advocacy, referral, education, and prevention for people, their families and friends struggling with eating disorders. Also provides resources for families, schools and the eating disorder community. Services include recovery mentorship, support groups, an annual conference and a YouTube recovery channel.

  • Internet Information Resources
  • Disease/Disability Information
  • Specialized Information and Referral
Source: Nationwide Suggest Providers Queue
Last Updated: 4/7/2022
Nationwide Provider
500 North Broadway Ste 1850
Saint Louis, MO 63102
Phone: 314-241-1600
Nationwide Provider
Address:
500 North Broadway Ste 1850
Saint Louis, MO 63102
Phone: 314-241-1600
Toll Free Phone: 800-532-6459
Fax: 314-241-1996
Email: communications@thenccs.org
Eligibility:

Parents and families of children in cancer treatment. Certain guidelines apply to each program. For further details, please visit website for guidelines specific to each program.

Services Provided:

The National Children's Cancer Society (NCCS) provides emotional, financial, and educational support to children with cancer and their families and survivors. NCCS provides a Family Support Program, Transportation Assistance Fund, and Emergency Assistance Fund to support families throughout the United States during their child's cancer treatment.

  • Incidental Medical Expense Assistance
Source: Nationwide Suggest Providers Queue
Last Updated: 4/7/2022
Nationwide Provider
8 East 41st Street, 8th Floor
New York, NY 10017
Nationwide Provider
Address:
8 East 41st Street, 8th Floor
New York, NY 10017
Toll Free Phone: 800-221-4602
Fax: 646-870-9320
Email: info@ndss.org
Services Provided:

A national advocacy and public policy center for individuals with down syndrome. Has more than 300 local organizations that serve the Down Syndrome community.

Services Include:

  • New parent support and education
  • Family meetings, sibling and grandparent support
  • Recreational activities
  • Lending libraries
  • Helplines
  • Regional conferences
  • Partnerships with Down syndrome clinics
  • Training for medical professionals and educators
  • Advocacy
  • Buddy Walks
Source: MHP-Nationwide
Last Updated: 3/2/2022
Nationwide Provider
4221 Forbes Blvd Suite 270
Lanham, MD 20706
Phone: 301-306-7070
Nationwide Provider
Organization Name: CHADD
(Show others in Organization)
Address:
4221 Forbes Blvd Suite 270
Lanham, MD 20706
Phone: 301-306-7070
Toll Free Phone: 866-200-8098
Fax: 301-306-7090
Email: nrc@chadd.org
Eligibility:

Open to the public, children and adults with attention-deficit/hyperactivity disorder, ADHD.

Services Provided: A program of CHADD providing an online clearinghouse for the latest evidence-based information and resources on ADHD through support groups and specialized information and referral.

  • Health/Disability Related Support Groups
  • Specialized Information and Referral
Provider Profiles:

Internet based resource

Source: Nationwide Suggest Providers Queue
Last Updated: 4/7/2022
Nationwide Provider
155 Second Street
Cambridge, MA 02141
Nationwide Provider
Address:
155 Second Street
Cambridge, MA 02141
Email: support@patientslikeme.com
Services Provided: Patients Like Me is a free health information sharing website for patients. Participants have the opportunity to share both personal stories and health data about their conditions; a network of 500,000 patients.
Source: Nationwide Suggest Providers Queue
Last Updated: 1/6/2020
Nationwide Provider
7900 Xerxes Avenue South Ste 810
Bloomington, MN 55431
Phone: 952-946-7998
Nationwide Provider
Address:
7900 Xerxes Avenue South Ste 810
Bloomington, MN 55431
Phone: 952-946-7998
Toll Free Phone: 800-273-8255
Email: lmars@save.org
Eligibility:

Anyone experiencing depression or thoughts of suicide, their families and loved ones.

Services Provided: Is a leading national non-profit working to prevent suicide through public awareness, education and training, program and product development, and providing support and resources for those touched by suicide.COVID-19 UPDATE: Please Call before visiting the office. Following all CDC and state guidelines.

  • Suicide Prevention Programs
Source: Nationwide Suggest Providers Queue
Last Updated: 4/7/2022
Nationwide Provider
111 Presidential Boulevard, Suite 203
Bala Cynwyd, PA 19004
Phone: 610-649-3034
Nationwide Provider
Organization Name: Alex's Lemonade Stand Foundation
(Show others in Organization)
Address:
111 Presidential Boulevard, Suite 203
Bala Cynwyd, PA 19004
Phone: 610-649-3034
Toll Free Phone: 866-333-1213
Fax: 610-649-3038
Email: info@alexslemonade.org
Eligibility:

Siblings and parents of childhood cancer.

Services Provided: A program of Alex's Lemonade Stand Foundation dedicated to comforting, encouraging, and empowering siblings during their family's battle against childhood cancer so these children and teens can face the future with courage and hope.COVID-19 UPDATE: Staff is working remotely. For fastest response, please use the online form to contact by email.

  • Health/Disability Related Support Groups
Source: Nationwide Suggest Providers Queue
Last Updated: 4/7/2022
Nationwide Provider
2440 Wisconsin Avenue NW, Suite 201
Washington, DC 20007
Phone: 202-813-3385
Nationwide Provider
Address:
2440 Wisconsin Avenue NW, Suite 201
Washington, DC 20007
Phone: 202-813-3385
Services Provided:

Provides a pediatric patient incentive program that help hospitalized kids confront the challenges of serious illness, adhere to their medical plans, and thrive.

Source: MHP-Nationwide
Last Updated: 12/22/2021
Nationwide Provider
1629 K Street NW, Suite 300
Washington, DC 20006
Phone: 202-600-8037
Nationwide Provider
Organization Name: Health Professionals Advancing LGBTQ Equality
(Show others in Organization)
Address:
1629 K Street NW, Suite 300
Washington, DC 20006
Phone: 202-600-8037
Fax: 202-478-1500
Email: info@glma.org
Services Provided:

Provides an online provider directory for lesbian, gay, bisexual, transgender or queer people looking for primary care providers, specialists, therapists, dentists and other health professionals.

Source: MHP-Nationwide
Last Updated: 1/20/2022
Nationwide Provider
1061 East Main Street, Suite 300
East Dundee, IL 60118
Nationwide Provider
Organization Name: World Professional Association for Transgender Health (WPATH)
(Show others in Organization)
Address:
1061 East Main Street, Suite 300
East Dundee, IL 60118
Email: wpath@wpath.org
Services Provided:

Provides a searchable provider directory of medical providers for transgender health.

Provider Profiles:

Formerly known as the Harry Benjamin International Gender Dysphoria Association (HBIGDA)

Source: MHP-Nationwide
Last Updated: 1/20/2022
Nationwide Provider
1012 14th Street NW, Suite 500
Washington, DC 20005
Phone: 201-250-8440
Nationwide Provider
Address:
1012 14th Street NW, Suite 500
Washington, DC 20005
Phone: 201-250-8440
Toll Free Phone: 800-714-5437
Fax: 201-250-8435
Email: info@parentprojectmd.org
Services Provided:

Provides information about Duchenne Muscular Dystrophy for families, including responding to a new diagnosis, finding care, and genetic testing. PPMD’s Decode Duchenne genetic testing program provides free genetic testing and counseling to people in the Duchenne or Becker muscular dystrophy community who otherwise could not afford genetic testing.

Runs Certified Duchenne Care Center Program, which supports standardized comprehensive care for people with Duchenne. Also promotes research and organizes advocacy initiatives.

Source: MHP-Nationwide
Last Updated: 1/20/2022
Nationwide Provider
PO Box 14686
Durham, NC 27709-4686
Phone: 919-806-0101
Nationwide Provider
Address:
PO Box 14686
Durham, NC 27709-4686
Phone: 919-806-0101
Toll Free Phone: 877-MPS-1001
Services Provided:

Provides support to families of children with mucopolysaccharidoses (MPS) and mucolipidosis (ML) diseases through education, fundraising assistance for medical expense assistance, resource guides, and advocacy.

Source: Nationwide Suggest Providers Queue
Last Updated: 2/1/2022
Nationwide Provider
2121 K Street NW Ste 200
Washington, DC 20037
Phone: 202-349-1155
Nationwide Provider
Address:
2121 K Street NW Ste 200
Washington, DC 20037
Phone: 202-349-1155
Toll Free Phone: 800-657-6398
Fax: 202-349-1156
Email: info@lupus.org
Services Provided:

Improves the quality of life for all people affected by lupus through programs of research, education, support, and advocacy.

  • Health/Disability Related Support Groups
  • Disease/Disability Information
  • Voluntary Health Organizations

Chapter Finder: Find support and connection in your community.

Source: MHP-Nationwide
Last Updated: 4/22/2022
Nationwide Provider
845 Third Avenue, 6th Floor
New York, NY 10022
Phone: 212-582-0343
Nationwide Provider
Address:
845 Third Avenue, 6th Floor
New York, NY 10022
Phone: 212-582-0343
Email: info@clubhouse-intl.org
Services Provided:

Provides a community of people with mental illness who are working together toward a common goal, to get their lives back. Helps open new Clubhouses, accredits Clubhouses, trains and mentors new and mature Clubhouses, educates the public, advocates for government funding, and conducts research.

Source: MHP-Nationwide
Last Updated: 2/23/2022
Nationwide Provider
3565 Piedmont Rd, NE Bldg 3, Suite 700
Atlanta, GA 30305
Phone: 800-232-4636
Nationwide Provider
Organization Name: Centers for Disease Control and Prevention
(Show others in Organization)
Address:
3565 Piedmont Rd, NE Bldg 3, Suite 700
Atlanta, GA 30305
Phone: 800-232-4636
TDD: 888-232-6348
Toll Free Phone: 800-232-4636
Services Provided:

The CDC National Prevention Information Network (NPIN) is the U.S. reference, referral and distribution service for information on HIV/AIDS, viral hepatitis, sexually transmitted diseases (STDs) and tuberculosis (TB). NPIN produces, collects, catalogs, processes, stocks and disseminates materials and information on HIV/AIDS, viral hepatitis, STDs and TB to organizations and people working in those disease fields in international, national, state and local settings. All NPIN services are designed to facilitate sharing of information and resources on education and prevention services, published materials, research findings and trends among users.

Source: Nationwide Suggest Providers Queue
Last Updated: 8/18/2021
Nationwide Provider
PO Box 1667
Sands Point, NY 11050-1299
Phone: 800-255-0411
Nationwide Provider
Address:
PO Box 1667
Sands Point, NY 11050-1299
Phone: 800-255-0411
Fax: 516-883-9060
Eligibility:

Contact for specific information.

Services Provided:

Advocates for all persons who are deaf-blind of any chronological age and cognitive ability.

Services Include:

  • Advocates
  • Fosters family-to-family relationships
  • Promote partnerships
  • Provides information and resources
  • Offers training opportunities
  • Promotes Deaf-Blind awareness
  • Builds family leaders

Source: Nationwide Suggest Providers Queue
Last Updated: 3/2/2022
Nationwide Provider
1275 K Street NW Suite 250
Washington, DC 20005
Phone: 202-407-8580
Nationwide Provider
Address:
1275 K Street NW Suite 250
Washington, DC 20005
Phone: 202-407-8580
Toll Free Phone: 800-782-4747
Fax: 202-289-6801
Services Provided: Leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships.

Find a local chapter, Certified Treatment Centers of Excellence, or support group: [http://www.alsa.org/community/ ALS Association In Your Community]
Source: Nationwide Suggest Providers Queue
Last Updated: 2/7/2020
Nationwide Provider
6520 North Andrews Avenue
Fort Lauderdale, FL 33309-2132
Nationwide Provider
Address:
6520 North Andrews Avenue
Fort Lauderdale, FL 33309-2132
Toll Free Phone: 800-225-6495
Wheelchair Access: Ramps
Services Provided: Nonprofit organization, our primary mission is to ensure the best quality of life for those coping with MS by providing comprehensive support and educational programs.

Disease/Disability Information
Information and Referral
Specialized Information and Referral
Source: Nationwide Suggest Providers Queue
Last Updated: 1/6/2020
Nationwide Provider
6110 Executive Boulevard, Suite 305
Rockville, MD 20852
Phone: 301-657-0881
Nationwide Provider
Address:
6110 Executive Boulevard, Suite 305
Rockville, MD 20852
Phone: 301-657-0881
Toll Free Phone: 800-328-8476
Email: info@autism-society.org
Services Provided:

Provides advocacy, education, information and referral, support for the Autism community at national, state and local levels through a nationwide network of Affiliates.

Source: Nationwide Suggest Providers Queue
Last Updated: 4/14/2022
Nationwide Provider
PO Box 498
Kensington, MD 20895
Phone: 301-962-3520
Nationwide Provider
Address:
PO Box 498
Kensington, MD 20895
Phone: 301-962-3520
Toll Free Phone: 855-858-2226
Fax: 301-962-3521
Services Provided:

Provides community support, information, and advocacy to advocacy to families, survivors, and friends who have been affected by childhood and adolescent cancer.


Source: Nationwide Suggest Providers Queue
Last Updated: 4/14/2022
Nationwide Provider
375 Kings Highway North
Cherry Hill, NJ 08034
Nationwide Provider
Address:
375 Kings Highway North
Cherry Hill, NJ 08034
Toll Free Phone: 800-532-7667
Fax: 856-661-9797
Email: msaa@mymsaa.org
Services Provided:

Provides ongoing support and direct services to individuals with multiple sclerosis.

Services Include:

  • Individual Advocacy
  • Information and Referral
  • Equipment Distribution Program by application
Source: Nationwide Suggest Providers Queue
Last Updated: 4/25/2022
Nationwide Provider
1220 L Street, NW Ste. Box 168
Washington, DC 20005
Phone: 301-966-2234
Nationwide Provider
Address:
1220 L Street, NW Ste. Box 168
Washington, DC 20005
Phone: 301-966-2234
Toll Free Phone: 888-575-7373
Email: info@ncld.org
Services Provided:

Aims to ensure success for all individuals with learning disabilities in school, at work and in life.

Services Include:

  • Information and Referral Resources
  • Library Services
  • Special Education Assessment
  • Speech and Language Evaluations
  • System Advocacy
  • Scholarships for two graduating high school seniors with documented learning disabilities and/or ADHD who are pursuing post-secondary education.
Source: Nationwide Suggest Providers Queue
Last Updated: 4/26/2022
Nationwide Provider
350 North Glendale Avenue, Suite B368
Glendale, CA 91206
Phone: 704-364-0016
Nationwide Provider
Address:
350 North Glendale Avenue, Suite B368
Glendale, CA 91206
Phone: 704-364-0016
Email: SolveCFS@SolveCFS.org
Services Provided:

Provides critical research into diagnostics, treatments, and cures for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long Covid and other post-infection diseases.

Source: Nationwide Suggest Providers Queue
Last Updated: 4/26/2022
Nationwide Provider
P.O. Box 525
Kennebunk, ME 04043
Nationwide Provider
Address:
P.O. Box 525
Kennebunk, ME 04043
Toll Free Phone: 800-826-0826
Email: susanburns@ostomy.org
Services Provided:

Promotes quality of life for people with ostomies and continent diversions through information, support, advocacy, and collaboration. Hosts a national network for bowel and urinary diversion support groups in the United States. 

Source: Nationwide Suggest Providers Queue
Last Updated: 5/7/2022
Nationwide Provider
290 Turnpike Road, Suite 5-315
Westborough, MA 01581
Nationwide Provider
Address:
290 Turnpike Road, Suite 5-315
Westborough, MA 01581
Toll Free Phone: 800-541-5454
Email: mgfa@myasthenia.org
Eligibility:

Patients, their families and caregivers, Myasthenia Gravis

Services Provided:

Increase awareness of myasthenia gravis (MG), supports those living with MG and creates connections for the MG community.

Services Include:

  • Adult Education
  • Co-Parenting Workshops
  • Individual Counseling
  • Information and Referral
  • Parent Support Groups
  • Peer Counseling
  • Support Groups
  • Supported Living Services for Adults with Disabilities
Source: Nationwide Suggest Providers Queue
Last Updated: 5/7/2022
Nationwide Provider
250 West 64th Street
New York, NY 10023
Phone: 212-769-6319
Nationwide Provider
Address:
250 West 64th Street
New York, NY 10023
Phone: 212-769-6319
Toll Free Phone: 800-284-4422
Eligibility:

For parents of children with visual impairment.

Services Provided:

Offers support services for parents who have a child with visual impairment. 

Services Include:

  • Information and Referral
  • Library Services
  • Parent Support Groups
Source: MHP-Nationwide
Last Updated: 8/10/2021
Nationwide Provider
505 Eighth Avenue, Suite 902
New York, NY 10018
Phone: 212-242-1968
Nationwide Provider
Address:
505 Eighth Avenue, Suite 902
New York, NY 10018
Phone: 212-242-1968
Toll Free Phone: 800-345-4372
Email: HDSAinfo@hdsa.org
Services Provided:

Dedicated to improving the lives of everyone affected by Huntington's disease. From community services and education to advocacy and research.

Services Include:

  • Information and Referral
  • Library Services
  • Peer Counseling
Source: Nationwide Suggest Providers Queue
Last Updated: 5/7/2022
Nationwide Provider
PO Box 659
Paoli, PA 19301
Phone: 888-999-9428
Nationwide Provider
Address:
PO Box 659
Paoli, PA 19301
Phone: 888-999-9428
Email: info@genetic.org
Services Provided: Information about chromosome variation for for parents and parents-to-be, individuals, and medical professionals.

Services include:
-Helpline: 888-999-9428 or helpline@genetic.org
-Support meetings, conferences, and webinars
-Information about chromosome variations
-[https://genetic.org/professional-directory-info/ Professional Directory]
-[https://genetic.org/im-adult-looking-answers/clinics/ AXYS Clinic and Research Consortium] clinic list
-[https://genetic.org/im-adult-looking-answers/support-groups/ Support Groups]
Source: Nationwide Suggest Providers Queue
Last Updated: 2/7/2020
Nationwide Provider
375 East Elm Street, Suite 101
Conshohocken, PA 19428
Nationwide Provider
Address:
375 East Elm Street, Suite 101
Conshohocken, PA 19428
Toll Free Phone: 866-224-3301
Services Provided:

Provides information about Guillain-Barre Syndrome an inflammatory disorder in which the body's immune system attacks the nerves outside the brain and spinal cord; and Chronic Inflammatory Demyelinating Polyneuropathy (CID).

Services Include:

  • Co-Parenting Workshops
  • Family Support Centers/Outreach
  • Parent Support Groups
  • Peer Counseling
Source: Nationwide Suggest Providers Queue
Last Updated: 5/7/2022
Nationwide Provider
Phone: 855-812-1001 Crisis Line: 855-812-1001
Nationwide Provider
Address:
Phone: 855-812-1001
Crisis Line: 855-812-1001
TDD: 800-787-3224
Toll Free Phone: 800-799-7233
Email: nationaldeafhotline@adwas.org
Languages Spoken: ASL
Services Provided:

Hotline

Offers email, video phone, and live chat services. Video phone and live chat available 24/7/365.

ADWAS & hotline advocates offer many ways to support callers as we can:

  • listen and provide emotional support
  • provide information and referrals
  • do domestic violence and sexual assault education
  • brainstorm with callers ways to keep safe
  • develop safety plans

Advocates can also work with Deaf and hearing friends and family members of Deaf survivors. Helpers can call us to learn more about intervention strategies and how to support survivors.

Support for Other Organizations

ADWAS also gives hearing domestic violence and sexual assault programs and shelters cultural training, support, education, and technical assistance to improve their accessibility for Deaf survivors. For shelters and programs that want training or information on working with Deaf survivors, they can contact us.

Information and Resources

Also offers a variety of resources, information, and support options for deaf survivors and their friends and families.

Provider Profiles:

ADWAS, in Seattle, Washington, partners with the National Domestic Violence Hotline (NDVH), in Austin, Texas, to provide DV services in American Sign Language.

Source: MHP-Nationwide
Last Updated: 8/11/2020
Nationwide Provider
1500 Dawson Road
Merry Acres Executive Building
Albany, GA 31707
Phone: 229-518-2680
Nationwide Provider
Address:
1500 Dawson Road
Merry Acres Executive Building
Albany, GA 31707
Phone: 229-518-2680
Toll Free Phone: 888-432-7899
Fax: 229-518-3879
Email: info@mendedhearts.org
Eligibility:

Patients and families of children with congenital heart disease.

Services Provided:

Provides ongoing peer-to-peer support, education, and advocacy to heart patients and their families. Local chapter locator available on website.

Services Include:

  • peer support and education
  • education resources
  • hospital outreach
  • CHD awareness
  • community health education
  • online community
  • advocacy
Source: Nationwide Suggest Providers Queue
Last Updated: 5/7/2022
Nationwide Provider
733 Third Avenue
New York, NY 10017
Nationwide Provider
Address:
733 Third Avenue
New York, NY 10017
Toll Free Phone: 800-344-4867
Services Provided:

Provides information, advocacy, research, and referrals for individuals with multiple sclerosis and their families. Website includes a locator for local chapters, doctors, resources, and events.

Source: Nationwide Suggest Providers Queue
Last Updated: 5/7/2022
Nationwide Provider
PO Box 8126
Gaithersburg, MD 20898-8126
Phone: 301-251-4925
Nationwide Provider
Organization Name: National Institutes of Health
(Show others in Organization)
Address:
PO Box 8126
Gaithersburg, MD 20898-8126
Phone: 301-251-4925
TDD: 888-205-3223
Toll Free Phone: 888-205-2311
Fax: 301-251-4911
Languages Spoken: Spanish
Services Provided:

GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic disease. In addition to website-based information you may contact a GARD Information Specialist. Also, GARD develops guides with tips on general topics, important resources, and answers to questions that patients, their families, and friends often ask us.

Provider Profiles:

GARD is a program of the National Center for Advancing Translational Sciences (NCATS) and is funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI).

Source: Nationwide Suggest Providers Queue
Last Updated: 9/18/2020
Cure SMA View on Map
Nationwide Provider
925 Busse Road
Elk Grove Village, IL 60007
Nationwide Provider
Address:
925 Busse Road
Elk Grove Village, IL 60007
Toll Free Phone: 800-886-1762
Email: info@curesma.org
Eligibility:

Individuals with spinal muscular atrophy (SMA)

Services Provided:

Funds and directs comprehensive research that drives breakthroughs in treatment and care, and provides families the support they need. Local and national programs.

Services Include:

  • An equipment pool loans medical equipment free of charge
  • Annual conference
  • Web-based location finder for support in your area
Source: MHP-Nationwide
Last Updated: 5/7/2022
Nationwide Provider
1 Bethany Road, Building 1, Suite S
Hazlet, NJ 07730
Phone: 800-594-4585
Nationwide Provider
Address:
1 Bethany Road, Building 1, Suite S
Hazlet, NJ 07730
Phone: 800-594-4585
Toll Free Phone: 800-594-4585
Email: info@tsfusa.org
Services Provided:

Supports research initiatives and facilitates education programs that increase professional awareness and enhance medical care of those affected by Turner syndrome.

Source: MHP-Nationwide
Last Updated: 7/10/2021
Nationwide Provider
300 Rosewood Drive Suite 105
Danvers, MA 01923
Phone: 978-463-5843
Nationwide Provider
Address:
300 Rosewood Drive Suite 105
Danvers, MA 01923
Phone: 978-463-5843
Fax: 978-463-5809
Eligibility: Those affected by scleroderma and their families.
Services Provided: Raise funds and awareness for support, education and research.
Provides educational and emotional support, stimulates and support research designed to identify the cause and cure for scleroderma, and improve methods of treatment; and enhances the public's awareness of this disease.
Chapters and Support Groups may be located in Resources.
Source: Nationwide Suggest Providers Queue
Last Updated: 1/9/2020
Nationwide Provider
Delaware, OH 43065
Phone: 740-972-5619
Nationwide Provider
Address:
Delaware, OH 43065
Phone: 740-972-5619
Eligibility:

Any persons with interest in MSUD

Services Provided:

The MSUD Family Support Group membership includes families and professionals worldwide.

Services Include:

  • Providing opportunities for support and personal contact for those with MSUD and their families.
  • Distributing information and raising public awareness of MS
  • Strengthening the liaison between families and professionals.
  • Encouraging newborn screening programs and research for MSUD.
Source: Nationwide Suggest Providers Queue
Last Updated: 9/1/2021
Nationwide Provider
1730 Rhode Island Ave NW, Suite #812
Washington, DC 20036
Phone: 202-918-1013
Nationwide Provider
Address:
1730 Rhode Island Ave NW, Suite #812
Washington, DC 20036
Phone: 202-918-1013
Fax: 202-918-1014
Email: info@caregiving.org
Services Provided:

National Alliance for Caregiving (NAC) provides resources for advocacy and research as well as resources for professionals, caregivers, and others.

Source: Nationwide Suggest Providers Queue
Last Updated: 2/14/2022
Nationwide Provider
6965 El Camino Real, Suite 105-598
Carlsbad, CA 92009
Nationwide Provider
Address:
6965 El Camino Real, Suite 105-598
Carlsbad, CA 92009
Email: info@creatineinfo.org
Services Provided:

The Association for Creatine Deficiencies’ mission is to provide patient, family, and public education, to advocate for early diagnoses, and to promote and fund medical research for treatments and cures for Cerebral Creatine Deficiency Syndromes (CCDS).

Offers information for patients and families, including online support groups, for clinicians, and about research.

Source: MHP-Nationwide
Last Updated: 8/18/2020
Nationwide Provider
P.O. Box 755
Perrysburg, OH 43552
Phone: 888-466-2948
Nationwide Provider
Address:
P.O. Box 755
Perrysburg, OH 43552
Phone: 888-466-2948
Toll Free Phone: 888-466-2948
Eligibility: Parents of children in the NICU, anticipating a difficult birth, or transitioning home
Services Provided:

Mission of Graham's Foundation is to support, comfort, inform, and guide families who experience a premature birth.

Programs:

Source: MHP-Nationwide
Last Updated: 8/19/2020
Nationwide Provider
22 Manhasset Avenue
Port Washington, NY 11050
Phone: 516-883-8712
Nationwide Provider
Address:
22 Manhasset Avenue
Port Washington, NY 11050
Phone: 516-883-8712
Toll Free Phone: 800-862-7326 x126
Fax: 516-883-8040
Eligibility: Contact for specific information.
Services Provided:

Provides support for people with Marfan Syndrome as well as family members. Meet as needed. Make referrals to a national organization. Refer people to other with Marfan. Moral support.

Marfan's Syndrome is an inherited condition of the connective tissues, bones, muscles, ligaments and skeletal structure whose symptoms include an irregular and unsteady gait and a tall, lean body type with long extremities including fingers and toes. There is an abnormal joint flexibility, flat feet, stooped shoulders, dislocation of the optic lens, and a weakened aorta.

Source: Nationwide Suggest Providers Queue
Last Updated: 10/29/2020
Nationwide Provider
655 New York Avenue NW, Floor 6
Washington, DC 20001
Phone: 202-975-0905
Nationwide Provider
Organization Name: Hearing Industries Association
(Show others in Organization)
Address:
655 New York Avenue NW, Floor 6
Washington, DC 20001
Phone: 202-975-0905
Services Provided:

Provides online hearing health resources related to product innovation, public policy, patient safety and education. Provides free online hearing checks.

Source: MHP-Nationwide
Last Updated: 2/22/2022
Nationwide Provider
1073 Willa Springs Drive, Suite 2005
Winter Springs, FL 32708
Phone: 866-605-9961
Nationwide Provider
Address:
1073 Willa Springs Drive, Suite 2005
Winter Springs, FL 32708
Phone: 866-605-9961
Toll Free Phone: 866-605-9961
Email: contact@cerebralpalsyguide.com
Services Provided:

Provides free educational materials, financial options, and emotional support for those affected by cerebral palsy.

Source: MHP-Nationwide
Last Updated: 8/19/2021
Nationwide Provider
7699 Biscayne Boulevard, Suite B
Miami, FL 33187
Phone: 877-645-4483
Nationwide Provider
Address:
7699 Biscayne Boulevard, Suite B
Miami, FL 33187
Phone: 877-645-4483
Email: info@myautism.org
Eligibility:

Provides families impacted by autism with informational resources, educational workshops, and therapeutic recreational programs.

Source: Nationwide Suggest Providers Queue
Last Updated: 4/22/2022
Nationwide Provider
P.O. Box 961029
Boston, MA 02196
Phone: 617-973-5801
Nationwide Provider
Address:
P.O. Box 961029
Boston, MA 02196
Phone: 617-973-5801
Services Provided:

The Foundation aims to improve outcomes for individuals with OCD and related disorders by:

  • Providing resources and support for those affected by OCD, including individuals with OCD and related disorders, their family members, friends, and loved ones.
  • Promoting awareness about OCD and related disorders to the OCD community and the general public.
  • Increasing access to effective treatment through:
    • Educating mental health professionals about evidence-based treatments.
    • Providing a forum for professional collaboration and networking.
    • Supporting research into the causes of and treatments for OCD and related disorders.

Visit https://iocdf.org/find-help/ for help finding providers for patients with OCD,

Source: MHP-Nationwide
Last Updated: 4/22/2022
Nationwide Provider
San Diego, CA
Nationwide Provider
Address:
San Diego, CA
Email: livingwithxxy@livingwithxxy.org
Services Provided:

Raises awareness of Klinefelter Syndrome by providing helpful resources and online forums for connection.

Resources Include:

  • Podcast
  • Documentary series
  • Youtube channel
  • Social media platforms
Source: MHP-Nationwide
Last Updated: 6/25/2021
Nationwide Provider
4 Reservoir Circle, Suite 200
Baltimore, MD 21208
Nationwide Provider
Address:
4 Reservoir Circle, Suite 200
Baltimore, MD 21208
Toll Free Phone: 800-273-2465
Email: families@cpfamilynetwork.org
Services Provided:

Cerebral Palsy Family Network (CPFN) is the world's largest online community for connecting and supporting families affected by cerebral palsy. Provides families with access to the educational, emotional, and financial resources.

Source: Nationwide Suggest Providers Queue
Last Updated: 2/1/2022
Nationwide Provider
330 C Street SW
Washington, DC 20201
Phone: 202-401-4634
Nationwide Provider
Organization Name: Administration for Community Living
(Show others in Organization)
Address:
330 C Street SW
Washington, DC 20201
Phone: 202-401-4634
Services Provided:

Protection and Advocacy Systems (P&As) work at the state level to protect individuals with disabilities by empowering them and advocating on their behalf. There are 57 P&As in the United States and its territories, and each is independent of service-providing agencies in their states. Find local P&A Agency information at the bottom of this page.

Source: MHP-Nationwide
Last Updated: 4/22/2022
Nationwide Provider
Institute for Community Inclusion UMass Boston
150 Mount Vernon Street
Boston, MA 02125
Phone: 617-287-4300
Nationwide Provider
Organization Name: Institute for Community Inclusion, University of Massachusetts Boston
(Show others in Organization)
Address:
Institute for Community Inclusion UMass Boston
150 Mount Vernon Street
Boston, MA 02125
Phone: 617-287-4300
Email: John.butterworth@umb.edu
Services Provided:

ThinkWork is the hub for an array of programs related to employment for people with IDD

Programs Include:

  • Rehabilitation Research & Training Center on Advancing Employment for Individuals with IDD
  • State Employment Leadership Network
  • Access to Integrated Employment
  • StateData
  • Florida EmployMe1st
  • Employment First Massachusetts Coordinating Center
  • Partnerships in Employment
  • Community Life Engagement
  • Employment Learning Community: Improving Systems and Services for Individuals with IDD
  • Real Work Stories
Source: Nationwide Suggest Providers Queue
Last Updated: 4/22/2022