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)

PO Box 961029
Boston, MA 02916
Phone: 617-973-5801
Service Categories:
Address:
PO Box 961029
Boston, MA 02916
Phone: 617-973-5801
Services Provided:

OCD and related disorders 

Provider Profiles:

The mission of the International OCD Foundation is to help those affected by obsessive compulsive disorder (OCD) and related disorders to live full and productive lives. Our aim is to increase access to effective treatment through research and training, foster a hopeful and supportive community for those affected by OCD and the professionals who treat them, and fight stigma surrounding mental health issues.

Source: Rhode Island Dept of Health, Office of Special Needs
Last Updated: 4/19/2021
30 East 33rd Street
New York, NY 10016
Phone: 800-622-9010
Service Categories:
Address:
30 East 33rd Street
New York, NY 10016
Phone: 800-622-9010
Toll Free Phone: 800-622-9010
Services Provided: The National Kidney Foundation is the leading organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease. Information about kidney disease. A peer mentor support program. Self management app for food choices.
Source: MHP-Nationwide
Last Updated: 8/13/2019
302 Jefferson Street, Ste. 110
PO Box 17646
Raleigh, NC 27605
Phone: 919-715-4092
Service Categories:
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
35 Halsey Street, 4th floor
c/o SPAN
Newark, NJ 97102
Phone: 973-642-8100
Service Categories:
Organization Name: Center for Parent Information and Resources (CPIR)
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Address:
35 Halsey Street, 4th floor
c/o SPAN
Newark, NJ 97102
Phone: 973-642-8100
Email: malizo@spanadvocacy.org
Eligibility: Disability-related issues for birth to 22
Services Provided: Information and referral center providing information on disabilities and disability-related issues for families, educators, and other professionals.
Provider Profiles: Internet information resources
Source: MHP-Nationwide
Last Updated: 4/23/2019
3417 Volta Place NW
Washington, DC 20007
Phone: 202-337-5220
Service Categories:
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
PO Box 3355
Gettysburg, PA 17325
Phone: 717-334-7992
Service Categories:
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
31 Center Dr., MSC 2320
Bethesda, MD 20892
Phone: 800-241-1044
Service Categories:
Organization Name: National Institutes of Health
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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
42-40 Bell Boulevard, Suite 205
Bayside, NY 11361-2820
Phone: 718-224-2999
Service Categories:
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
500 Montgomery Street, Suite 820
Alexandria, VA 22314
Phone: 703-684-7722
Service Categories:
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
55 East Jackson Blvd., Suite 490
Chicago, IL 60604
Phone: 800-826-3632
Service Categories:
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
6001 Executive Boulevard, Room 6200, MSC 9663
Bethesda, MD 20892-9663
Phone: 866-615-6464
Service Categories:
Organization Name: National Institutes of Health
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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
9605 Medical Center Dr Suite 280
Rockville, MD 20850
Phone: 240-403-1901
Service Categories:
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
P.O. Box 472
State College, PA 16804
Phone: 484-272-7368
Service Categories:
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
1825 K Street NW, Suite 1200
Washington, DC 20006
Phone: 301-565-3842
Service Categories:
Address:
1825 K Street NW, Suite 1200
Washington, DC 20006
Phone: 301-565-3842
Toll Free Phone: 800-433-5255
Fax: 301-565-3843
Eligibility: developmental disabilities
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: Medical Home Portal
Last Updated: 8/6/2019
8588 Potter Park Drive, Suite 500
Sarasota, FL 34238
Service Categories:
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
1963 McCraren Rd.
Highland Park, IL 60035
Service Categories:
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
4550 Montgomery Avenue, Suite 1100 N
Bethesda, MD 20814
Phone: 301-951-4422
Service Categories:
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
13140 Coit Road, Suite 517
Dallas, TX 75240
Phone: 214-570-9099
Service Categories:
Address:
13140 Coit Road, Suite 517
Dallas, TX 75240
Phone: 214-570-9099
Toll Free Phone: 800-535-3646
Fax: 214-570-8811
Email: areeves@ccakids.com
Eligibility: People with facial differences and their families
Services Provided: Children's Craniofacial Association is a national nonprofit organization, dedicated to improving the quality of life for people with facial differences and their families. Nationally and internationally, CCA 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.
Provider Profiles: Annual Family Retreat & Educational Symposium June 28 - July 1, 2018, Little America Hotel, Salt Lake City. Registration $75 - $100 per family. Scholarships available.
Source: MHP-Nationwide
Last Updated: 11/19/2019
Albany Medical Center, MC-28
Albany Medical Center
Delmar, NY 12054
Phone: 518-262-5079
Service Categories:
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
75 Executive Drive, Suite 327
Aurora, IL 60504
Phone: 630-978-4245
Service Categories:
Address:
75 Executive Drive, Suite 327
Aurora, IL 60504
Phone: 630-978-4245
Toll Free Phone: 800-432-6435
Fax: 630-978-7408
Services Provided: Our mission is to raise awareness and provide a resource 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. Regional representatives provide networking and referrals in your area.
Source: Medical Home Portal
Last Updated: 8/6/2019
4200 Cantera Drive, Suite 106
Warrenville, IL 60555
Phone: 630-836-8200
Service Categories:
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
8161 Normandale Blvd.
Bloomington, MN 55437
Phone: 952-838-9000
Service Categories:
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
6512 23rd Ave NW, Unit 213
Seattle, WA 98117
Phone: 206-297-6368
Service Categories:
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
161 N. Clark, Suite 3550
Chicago, IL 60601
Phone: 406-655-9000
Service Categories:
Address:
161 N. Clark, Suite 3550
Chicago, IL 60601
Phone: 406-655-9000
Services Provided:

Since 1950, we've spearheaded efforts to transform the lives of people with muscular dystrophy, ALS, and related neuromuscular diseases. We fund groundbreaking research for promising treatments and provide families with the highest quality care from the best doctors in the country.

Source: MHP-Nationwide
Last Updated: 6/3/2021
5420 S. Quebec Street, Suite 135
Greenwood Village, CO 80111
Phone: 303-794-1182
Service Categories:
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
PO Box 4067
Parker, CO 80134
Service Categories:
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
4340 East West Highway, Suite 905
Bethesda, MD 20814
Phone: 301-202-3811
Service Categories:
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
115 E. 23rd St., 9th Floor
New York, NY 10010
Service Categories:
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
Haworth Hall, Room 313
1200 Sunnyside Avenue
Lawrence, KS 66045-7534
Phone: 785-864-7600
Service Categories:
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
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06810
Phone: 203-744-0100
Service Categories:
Organization Name: National Organization for Rare Disorders
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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
12 Hurley Avenue
Kingston, NY 12401
Phone: 845-331-4336
Service Categories:
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
Service Categories:
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
8701 Georgia Ave., Suite Unit 412
Silver Spring, MD 20910
Phone: 240-485-1001
Service Categories:
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
New Brunswick, NJ
Phone: 877-914-6662 Crisis Line: 877-914-6662
Service Categories:
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
108 NE 2nd St
PO Box 510
Concordia, MO 64020
Phone: 660-463-1355
Service Categories:
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
4301 Connecticut Ave. N.W., Suite 404
Washington, DC 20008
Phone: 800-651-9131
Service Categories:
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
Cambridge, MA
Phone: 617-768-9000
Service Categories:
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
40 York Road, 4th Floor
Baltimore, MD 21204
Phone: 410-296-0232
Service Categories:
Address:
40 York Road, 4th Floor
Baltimore, MD 21204
Phone: 410-296-0232
Fax: 410-321-5069
Email: info@interdys.org
Services Provided: Information handbook, annual conference, scholarships for teachers and for parents to attend conference, listing of other grants, and provider lists by state.
Source: Medical Home Portal
Last Updated: 7/23/2019
900 East Hill Ave, Suite 390
Knoxville, TN 37915
Service Categories:
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
Chicago, IL 60610-3131
Phone: 312-274-2650
Service Categories:
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
611 Rockville Pike, Suite 150
Rockville, MD 20852
Phone: 204-246-7140
Service Categories:
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
12180 South 300 East Unit 532
PO Box 532
Draper, UT 84020-0532
Service Categories:
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
4600 Devitt Drive
Cincinnati, OH 45246
Phone: 800-818-7388
Service Categories:
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
30 Tower Lane
Avon, CT 06001
Phone: 860-753-2357
Service Categories:
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
PO Box 37188
Albuquerque, NM 87176
Phone: 505-872-4774
Service Categories:
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
201 Chicago Avenue, Unit 200
Minneapolis, MN 55415
Service Categories:
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
4301 Connecticut Avenue NW, Suite 160
Washington, DC 20008-2326
Service Categories:
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
2350 West Higgins Road
Hoffman Estates, IL 60169
Phone: 847-885-6147
Service Categories:
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: Through national campaigns, educational programs, and by empowering individuals with Down syndrome, their families and the community, we offer free therapeutic and educational programming to individuals with Down syndrome and their families. At GiGi’s Playhouse families are never alone. From a prenatal diagnosis to career skills, we make a lifetime commitment to remain by their side. Families are empowered with all the tools their child needs to succeed!
Provider Profiles: Over 30 locations across the United States and Mexico and 200 inquiries to start new locations all over the world.
Source: MHP-Nationwide
Last Updated: 9/25/2019
6 East 39th Street, Suite 1204
New York, NY 10016
Phone: 212-647-7544
Service Categories:
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
10586 West Pico Boulevard, Unit 196
Los Angeles, CA 90064
Phone: 260-225-3736
Service Categories:
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: 1/7/2020
KS
Phone: 202-448-1448
Service Categories:
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
4301 Wilson Boulevard, Suite 300
Arlington, VA 22203
Phone: 703-524-7600
Service Categories:
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
Service Categories:
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
1400 Quail Street, Suite 110
Newport Beach, CA 92660
Phone: 949-872-2552
Service Categories:
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
PO Box 737
Owingsville, KY 40360
Service Categories:
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
120 Wall Street, 16th Floor
New York, NY 10005-3904
Phone: 212-344-6633
Service Categories:
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
1004 A O'Reilly Avenue
San Francisco, CA 94129
Phone: 415-800-7777
Service Categories:
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
801 Roeder Road, Suite 750
Silver Spring, MD 20910-4487
Phone: 301-562-9890
Service Categories:
Address:
801 Roeder Road, Suite 750
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: Tuberous sclerosis complex (TSC) nationwide nonprofit organization. Website identifies TSC Clinics, a TSC Clinic Screening Tool, and a locator for local resources.
Source: Medical Home Portal
Last Updated: 8/6/2019
P.O. Box 643
Erie, CO 80516
Phone: 831-200-4227
Service Categories:
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
9000 Rockville Pike
Bethesda, MD 20982
Service Categories:
Organization Name: National Institutes of Health
(Show others in Organization)
Address:
9000 Rockville Pike
Bethesda, MD 20982
Toll Free Phone: 844-746-4836
Email: UDN@hms.harvard.edu
Services Provided: The Common Fund’s Undiagnosed Diseases Network (UDN) is a research study to improve and accelerate diagnosis of rare and undiagnosed conditions. The UDN uses both basic and clinical research to improve the level of diagnosis and uncover the underlying disease mechanisms associated with these conditions; pioneering a new personalized medicine model.
Twelve clinical sites, a coordinating center, a sequencing core, a metabolomics core, two model organisms screening centers, and a central biorepository.
Source: Medical Home Portal
Last Updated: 11/11/2019
1200 Eton Court, NW, Third Floor
Washington, DC 20007
Phone: 202-785-4585
Service Categories:
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
4156 Library Road
Pittsburgh, PA 15234-1349
Phone: 412-341-1515
Service Categories:
Address:
4156 Library Road
Pittsburgh, PA 15234-1349
Phone: 412-341-1515
Fax: 412-344-0224
Email: info@LDAAmerica.org
Eligibility: People with disabilities, their parents, teachers, and other professionals
Services Provided: LDA 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: 8/8/2019
PO Box 103
Denver, PA 17517
Phone: 800-939-1019
Service Categories:
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
1060 State Road, 2nd Floor
Princeton, NJ 08540
Phone: 646-385-8500
Service Categories:
Address:
1060 State Road, 2nd Floor
Princeton, NJ 08540
Phone: 646-385-8500
Toll Free Phone: 888-288-4762
Email: help@autismspeaks.org
Eligibility:

People with autism, their families and caregivers.

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.

  • Specialized Information and Referral
  • Disease/Disability Information
Source: Nationwide Suggest Providers Queue
Last Updated: 8/19/2021
Cancer Care View on Map
275 Seventh Avenue
New York, NY 10001
Phone: 800-813-4673
Service Categories:
Address:
275 Seventh Avenue
New York, NY 10001
Phone: 800-813-4673
Toll Free Phone: 800-813-4673
Fax: 212-712-8495
Email: info@cancercare.org
Services Provided:

Provides online, telephone, and in-person counseling, support groups, educational workshops, publications, financial, and co-payment 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: 6/3/2021
733 Third Avenue, Suite 510
New York, NY 10017
Phone: 800-932-2423
Service Categories:
Address:
733 Third Avenue, Suite 510
New York, NY 10017
Phone: 800-932-2423
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: 6/3/2021
PO Box 268
Lakewood, CA 90713
Phone: 888-970-0777
Service Categories:
Address:
PO Box 268
Lakewood, CA 90713
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 a comprehensive resource 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: 6/3/2021
110 West Road Ste 300
Towson, MD 21204
Phone: 800-296-4433
Service Categories:
Address:
110 West Road Ste 300
Towson, MD 21204
Phone: 800-296-4433
Fax: 410-321-9165
Email: frontdesk@primaryimmune.org
Eligibility:

Individuals with primary immunodeficiency diseases and their families

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, and research.

COVID-19 HOURS: Following all CDC and State guidelines.

  • Disease/Disability Information
  • Health/Disability Related Support Groups
Source: MHP-Nationwide
Last Updated: 6/3/2021
623 West 38th Street, Suite 300
Austin, TX 78705
Phone: 877-236-8820
Service Categories:
Address:
623 West 38th Street, Suite 300
Austin, TX 78705
Phone: 877-236-8820
Toll Free Phone: 855-220-7777
Eligibility: Cancer patients
Services Provided:

Empowers the cancer community to address the unmet needs of cancer survivors. To do so, collaboration, knowledge-sharing, and partnership are encouraged. Develops evidence-based solutions to address both the common and unique problems survivors are facing around the world.

  • Specialized Information and Referral
Source: Nationwide Suggest Providers Queue
Last Updated: 11/4/2020
35 Halsey Street 4th Floor
Center for Parent Information and Resources
Newark, NJ 07102
Phone: 973-642-8100
Service Categories:
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: Center for Parent Information and Resources continues to offer services through their website 24/7.

  • Planning/Coordinating/Advisory Groups
Source: MHP-Nationwide
Last Updated: 6/3/2021
220 North Green Street
Chicago, IL 60607
Phone: 312-262-6897
Service Categories:
Address:
220 North Green Street
Chicago, IL 60607
Phone: 312-262-6897
Email: hello@anad.org
Services Provided:

The National Association of Anorexia Nervosa and Associated Disorders, Inc. (ANAD) is a non-profit organization working in the areas of support, awareness, advocacy, referral, education, and prevention. ANAD assists people struggling with eating disorders and also provides resources for families, schools and the eating disorder community. Services include ANAD recovery mentorship, ANAD support groups, ANAD annual conference, and ANAD YouTube recovery channel.

  • Internet Information Resources
  • Disease/Disability Information
  • Specialized Information and Referral
Source: Nationwide Suggest Providers Queue
Last Updated: 6/17/2021
500 North Broadway Ste 1850
Saint Louis, MO 63102
Phone: 800-532-6459
Service Categories:
Address:
500 North Broadway Ste 1850
Saint Louis, MO 63102
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: 6/3/2021
8 East 41st Street, 8th Floor
New York, NY 10017
Phone: 212-460-9330
Service Categories:
Address:
8 East 41st Street, 8th Floor
New York, NY 10017
Phone: 212-460-9330
Toll Free Phone: 800-221-4602
Email: info@ndss.org
Services Provided: A national advocacy and public policy center for persons with down syndrome. Nearly all of the 375 local affiliates have a parent support component. Affiliate services and programs may 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 and Buddy Walks.
Source: MHP-Nationwide
Last Updated: 8/6/2019
4221 Forbes Blvd Suite 270
Lanham, MD 20706
Phone: 301-306-7070
Service Categories:
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:

Provides an online clearinghouse for the latest evidence-based information and resources on ADHD. The National Resource Center on ADHD is a program of CHADD.

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

Internet based resource

Source: Nationwide Suggest Providers Queue
Last Updated: 6/2/2021
155 Second Street
Cambridge, MA 02141
Service Categories:
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
7900 Xerxes Avenue South Ste 810
Bloomington, MN 55431
Phone: 800-273-8255
Service Categories:
Address:
7900 Xerxes Avenue South Ste 810
Bloomington, MN 55431
Phone: 800-273-8255
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:

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: Visitors are not allowed in the office and should call for answers to questions.

  • Suicide Prevention Programs
Source: Nationwide Suggest Providers Queue
Last Updated: 9/9/2021
111 Presidential Blvd., Suite 203
Bala Cynwyd, PA 19004
Phone: 610-649-3034
Service Categories:
Organization Name: Alex's Lemonade Stand Foundation
(Show others in Organization)
Address:
111 Presidential Blvd., 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 children with 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.

  • Health/Disability Related Support Groups
Source: Nationwide Suggest Providers Queue
Last Updated: 10/30/2020
1133 19th Street, NW Suite 302
Washington, DC 20036
Phone: 202-600-8037
Service Categories:
Organization Name: GLMA Health Professionals Advancing LGBTQ Equality
(Show others in Organization)
Address:
1133 19th Street, NW Suite 302
Washington, DC 20036
Phone: 202-600-8037
Fax: 202-478-1500
Email: info@glma.org
Services Provided: Are you lesbian, gay, bisexual, transgender or queer and looking for a healthcare professional you can trust?

GLMA’s online Provider Directory can help. Search for primary care providers, specialists, therapists, dentists and other health professionals in your area.

The service is free and you do not need to register.
Source: MHP-Nationwide
Last Updated: 5/9/2019
East Dundee, IL
Service Categories:
Organization Name: World Professional Association for Transgender Health (WPATH)
(Show others in Organization)
Address:
East Dundee, IL
Services Provided: 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: 5/9/2019
2121 K Street NW Ste 200
Washington, DC 20037
Phone: 202-349-1155
Service Categories:
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
Languages Spoken: Spanish
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: 6/3/2021
747 Third Avenue, 2nd floor
New York, NY 10017
Phone: 212-582-0343
Service Categories:
Address:
747 Third Avenue, 2nd floor
New York, NY 10017
Phone: 212-582-0343
Email: info@clubhouse-intl.org
Services Provided: A Clubhouse is a community of people with mental illness who are working together toward a common goal, to get their lives back. Clubhouse International 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: 7/17/2019
3565 Piedmont Rd, NE Bldg 3, Suite 700
Atlanta, GA 30305
Phone: 800-232-4636
Service Categories:
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
141 Middle Neck Road
Sands Point, NY 11050-1299
Phone: 800-255-0411
Service Categories:
Address:
141 Middle Neck Road
Sands Point, NY 11050-1299
Phone: 800-255-0411
Fax: 516-883-9060
Eligibility: Contact for specific information.
Services Provided: NFADB advocates for all persons who are deaf-blind of any chronological age and cognitive ability; supports national policy to benefit people who are deaf-blind; encourages the founding and strengthening of family organizations in each state which are dedicated to assisting families of persons who are deaf-blind; shares information related to deaf-blindness and provides resources and referrals; collaborates with professionals who work with persons who are deaf-blind; is actively involved in national projects for deaf-blind to ensure consumer and family representation; and assists in the development of materials and training seminars which benefit family members.
Source: Nationwide Suggest Providers Queue
Last Updated: 8/6/2019
1275 K Street NW Suite 250
Washington, DC 20005
Phone: 202-407-8580
Service Categories:
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
6520 North Andrews Avenue
Fort Lauderdale, FL 33309-2132
Service Categories:
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
375 Kings Highway North
Cherry Hill, NJ 08034
Service Categories:
Address:
375 Kings Highway North
Cherry Hill, NJ 08034
Toll Free Phone: 800-532-7667
Fax: 856-661-9797
Email: MSquestions@mymsaa.org
Eligibility: Individuals with MS
Services Provided: Ongoing support and direct services.

Individual Advocacy
Information and Referral
Equipment Distribution Program by application
Source: Nationwide Suggest Providers Queue
Last Updated: 8/8/2019
32 Laight Street, Second Floor
New York, NY 10013
Phone: 212-545-7510
Service Categories:
Address:
32 Laight Street, Second Floor
New York, NY 10013
Phone: 212-545-7510
Toll Free Phone: 888-575-7373
Eligibility: Individuals with learning disabilities
Services Provided: Aims to ensure success for all individuals with learning disabilities in school, at work and in life. We:1) connect parents and others with resources, guidance and support so they can advocate effectively for their children; 2) deliver evidence-based tools, resources and professional development to educators to improve student outcomes, and 3) develop policies and engage advocates to strengthen educational rights and opportunities.

Information and Referral
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: 8/8/2019
2489 Rice Street, Suite 120
Roseville, MN 55113
Phone: 714-660-8624
Service Categories:
Address:
2489 Rice Street, Suite 120
Roseville, MN 55113
Phone: 714-660-8624
Toll Free Phone: 800-826-0826
Email: susanburns@ostomy.org
Services Provided: A national network for bowel and urinary diversion support groups in the United States. Its goal is to provide a nonprofit association that will serve to unify and strengthen its member support groups, which are organized for the benefit of people who have, or will have intestinal or urinary diversions and their caregivers.

Peer Counseling
Source: Nationwide Suggest Providers Queue
Last Updated: 8/12/2019
355 Lexington Ave 15th Floor
New York, NY 10017
Service Categories:
Address:
355 Lexington Ave 15th Floor
New York, NY 10017
Toll Free Phone: 800-541-5454
Fax: 212-297-2159
Eligibility: Patients, their families and caregivers, Myasthenia Gravis
Services Provided: MGFA serves through a network of chapters, support groups and programs. Each chapter shares the vision of a world without MG.

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: 11/19/2019
250 West 64th Street
New York, NY 10023
Phone: 212-769-6319
Service Categories:
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
PO Box 659
Paoli, PA 19301
Phone: 888-999-9428
Service Categories:
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
Wynnewood, PA 19096
Phone: 610-667-0131
Service Categories:
Address:
Wynnewood, PA 19096
Phone: 610-667-0131
Toll Free Phone: 866-224-3301
Fax: 601-667-7036
Services Provided: Information about Guillain-Barre Syndrome an inflammatory disorder in which your body's immune system attacks the nerves outside the brain and spinal cord; and Chronic Inflammatory Demyelinating Polyneuropathy (CID).

Co-Parenting Workshops
Family Support Centers/Outreach
Parent Support Groups
Peer Counseling
Source: Nationwide Suggest Providers Queue
Last Updated: 8/12/2019
Phone: 855-812-1001 Crisis Line: 855-812-1001
Service Categories:
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
PO Box 8126
Gaithersburg, MD 20898-8126
Phone: 301-251-4925
Service Categories:
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
925 Busse Road
Elk Grove Village, IL 60007
Phone: 800-886-1762
Service Categories:
Address:
925 Busse Road
Elk Grove Village, IL 60007
Phone: 800-886-1762
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. 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: 9/25/2019
199 Water Street 11th Floor
New York, NY 10038
Phone: 212-363-3500
Service Categories:
Address:
199 Water Street 11th Floor
New York, NY 10038
Phone: 212-363-3500
Toll Free Phone: 888-333-2377
Email: info@afsp.org
Services Provided: AFSP raises awareness, funds scientific research and provides resources and aid to those affected by suicide. AFSP has local chapters in all 50 states with programs and events nationwide. Search for chapters on website.
Source: MHP-Nationwide
Last Updated: 11/11/2019
1 Bethany Road, Building 1, Suite S
Hazlet, NJ 07730
Phone: 800-594-4585
Service Categories:
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
300 Rosewood Drive Suite 105
Danvers, MA 01923
Phone: 978-463-5843
Service Categories:
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
Delaware, OH 43065
Phone: 740-972-5619
Service Categories:
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
6965 El Camino Real, Suite 105-598
Carlsbad, CA 92009
Service Categories:
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
P.O. Box 755
Perrysburg, OH 43552
Phone: 888-466-2948
Service Categories:
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
22 Manhasset Avenue
Port Washington, NY 11050
Phone: 516-883-8712
Service Categories:
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
655 New York Avenue NW, Floor 6
Washington, DC 20001
Phone: 202-975-0905
Service Categories:
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: 3/30/2021
1073 Willa Springs Drive, Suite 2005
Winter Springs, FL 32708
Phone: 866-605-9961
Service Categories:
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
7699 Biscayne Boulevard, Suite B
Miami, FL 33187
Phone: 877-645-4483
Service Categories:
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: 4/26/2021
P.O. Box 961029
Boston, MA 02196
Phone: 617-973-5801
Service Categories:
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: 6/17/2021
San Diego, CA
Service Categories:
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
4 Reservoir Circle, Suite 200
Baltimore, MD 21208
Service Categories:
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: 8/18/2021
330 C Street SW
Washington, DC 20201
Phone: 202-401-4634
Service Categories:
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: 9/9/2021