Education About Disabilities/Diagnoses

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Programs that offer workshops, discussion groups, activities and other types of training that sensitize participants to people with disabilities, visible differences, and mental health and mental illness. Includes information for individuals and families with these conditions, as well as information to help others experience what it is like to have a disability, and share techniques for positive communication and interaction with people who have disabilities. (Adapted from AIRS PH-6200.1850 Disability Awareness Programs )

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
Address:
PO Box 7762
Wilmington, DE 19803
Services Provided:

The Childhood RND Educational Foundation is a 501(c)(3) non-profit organization dedicated to educating health professionals and families who deal with amplified musculoskeletal pain syndromes (AMPS) such as fibromyalgia, complex regional pain syndrome (CRPS), RSD, RND, neuropathic pain and myofascial pain. Services include:
-Educational materials about a variety of pain issues
-[https://stopchildhoodpain.org/faqs/what-hospitals-offer-this-treatment-program/ Directory of pediatric AMPS treatment programs.]

Source: MHP-Nationwide
Last Updated: 10/28/2020
P.O. Box 4780
Rockville, MD 20849-6303
Phone: 800-448-0440
Organization Name: National Institutes of Health
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Address:
P.O. Box 4780
Rockville, MD 20849-6303
Phone: 800-448-0440
TDD: 888-480-3739
Fax: 301-315-2818
Eligibility: HIV/AIDS patients, their families and friends, health care providers and researchers.
Services Provided:

AIDS info is a U.S. Department of Health and Human Services (DHHS) project providing information on HIV/AIDS clinical trials and treatment. It is the result of merging two previous DHHS projects: The AIDS Clinical Trials Information Service (ACTIS) and the HIV/AIDS Treatment Information Service (ATIS).

AIDS info is a central resource for current information on federally and privately funded clinical trials for AIDS patients and others infected with HIV. AIDS clinical trials evaluate experimental drugs and other therapies for adults and children at all stages of HIV infection -- from patients who are HIV positive with no symptoms to those with various symptoms of AIDS.

Source: Nationwide Suggest Providers Queue
Last Updated: 9/4/2020
31 Center Dr, MSC 2510
Bethesda, MD 20892-2510
Phone: 301-496-5248
Organization Name: National Institutes of Health
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Address:
31 Center Dr, MSC 2510
Bethesda, MD 20892-2510
Phone: 301-496-5248
Email: 2020@nei.nih.gov
Services Provided:

National Eye Institute is the principal agency for conducting and supporting vision research aimed at improving the prevention, diagnosis, treatment and rehabilitation of diseases that affect the eye and vision

Source: Nationwide Suggest Providers Queue
Last Updated: 9/18/2020
Understood View on Map
145 Hudson Street, Suite 5B
New York, NY 10013–2150
Phone: (516) 654-7584
Address:
145 Hudson Street, Suite 5B
New York, NY 10013–2150
Phone: (516) 654-7584
Email: media@understood.org
Eligibility: Individuals with learning and thinking differences and their families
Services Provided:

Resources for individuals with thinking and learning differences, including ADHD, dyslexia, and dyscalculia. Information for parents, educators, and young adults. Also offers a workplace program for individuals in the workplace.

Offerings include articles and online resources, information about how to get assistance, and an online community.

Source: Nationwide Suggest Providers Queue
Last Updated: 6/26/2020
PO Box 659
Paoli, PA 19301
Phone: 888-999-9428
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
Address:
Rhode Island College
600 Mount Pleasant Avenue
Providence, RI 02908
Phone: 401-456-8072
TDD: 800-745-5555
Fax: 401-456-8150
Languages Spoken: Spanish via RI Relay 711 or (866) 355-9241
Eligibility: Statewide
Services Provided: Services Provided:
• Technical assistance and training in the areas of Early Intervention, infant mental health and trauma-based care practices, inclusive practices in schools, Positive Behavioral Interventions and Supports and Multi-Tiered Systems of Supports in schools, learners with low incidence disabilities (vision, hearing, deaf-blindness), transition from high school, and community-based employment strategies for youth and adults.
• Services include:
o Instruction and mobility services to children who are blind or visually impaired.
o Educational Advocates for students with disabilities who are in state care.
o Benefits counseling and assistance for Social Security beneficiaries.
o Family support and navigation of services.
o Support group for self-directed support users (DDD)
o Plan writing for self-directed support users (DDD).
o Support for parents with intellectual disabilities.
o Support to students in post-secondary education.
Provider Profiles: Paul V. Sherlock Center on Disabilities, founded at Rhode Island College in 1993, is a University Center for Excellence in Developmental Disabilities (UCEDD). UCEDDs are evidence driven and designed to advance policies, practices, and research that improve the health, education, social, and economic well-being of people with disabilities, their families, and their communities. There are 67 UCEDD programs in the United States. This national network is administered through the United States Department of Health and Human Services Administration on Developmental Disabilities.
The Sherlock Center partners with state and national agencies, schools, institutions of higher education and community providers to implement its core functions: preservice preparation, services (including technical assistance, community education, and direct services), research, and information dissemination. As of 2016, the Sherlock Center is a LEND (Leadership Education in Neurodevelopmental and Related Disabilities) Program.
Areas of Emphasis:
Early Childhood and Education
Inclusion and Community Membership
Low Incidence Disabilities
Self-Determination
Transition, Employment and Adult Life
Workforce and Professional Development
Source: Rhode Island Dept of Health, Office of Special Needs
Last Updated: 10/21/2019
4340 East-West Highway Suite 350
Bethesda, MD 20814
Phone: 301-657-0881
Address:
4340 East-West Highway Suite 350
Bethesda, MD 20814
Phone: 301-657-0881
Toll Free Phone: 800-328-8476
Email: info@autism-society.org
Services Provided: We provide advocacy, education, information and referral, support, and community at national, state and local levels through our strong nationwide network of Affiliates.

Disability Awareness Programs
Specialized Information and Referral
Source: Nationwide Suggest Providers Queue
Last Updated: 8/7/2019
Organization Name: Centers for Disease Control and Prevention
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Address:
1600 Clifton Road
Atlanta, GA 30329
Phone: 800-232-4636
TDD: 888-232-6348
Toll Free Phone: 800-232-4636
Eligibility: Open to the public.
Services Provided:

Information provided on more than 750 health topics, including travel immunizations, disease outbreaks, natural disasters, and other emergencies

Source: MHP-Nationwide
Last Updated: 10/30/2020
Organization Name: National Institutes of Health
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Address:
3 Information Way
Bethesda, MD 20892-3580
Phone: 800-860-8747
TDD: 866-569-1162
Email: healthinfo@niddk.nih.gov
Eligibility: Contact for specific information.
Services Provided:

NIDDK research creates knowledge about and treatments for diseases that are among the most chronic, costly, and consequential for patients, their families, and the Nation. Offers clinical trials, financial assistance for researchers, health information, and publications.

Source: Nationwide Suggest Providers Queue
Last Updated: 9/18/2020
24 South 1100 East, Suite 205
Salt Lake City, UT 84102
Phone: 801-359-7400
Address:
24 South 1100 East, Suite 205
Salt Lake City, UT 84102
Phone: 801-359-7400
Fax: 801-359-7404
Email: support@batemanhornecenter.org
Wheelchair Access: Complete
Eligibility: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM), and other related illnesses. Must have a primary care provider and complete an application.
Services Provided: Leading the way in the medical advancement and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia. Formerly the Fatigue Consultation Clinic (FCC) and the Organization for Fatigue & Fibromyalgia Education & Research (OFFER), BHC been committed to the education of medical providers for more than 25 years.

Engages in research and provides treatment. Educational Resources available for providers and patients.

Contact Information:
Clinic Phone: (801) 359-7400
Research Phone: (801) 532-8311
Research Fax: (801) 364-3528
Clinic Fax: (801) 359-7404
Source: Nationwide Suggest Providers Queue
Last Updated: 4/17/2020
6728 Old McClean Village Dr
Mclean, VA 22101
Phone: 703-556-9222
Organization Name: Pediatric Endocrine Society (PES)
(Show others in Organization)
Address:
6728 Old McClean Village Dr
Mclean, VA 22101
Phone: 703-556-9222
Fax: 703-556-8729
Email: info@pedsendo.org
Services Provided:

Offers a variety of clinical and patient resources as well as educational events for clinicians.

Find a Pediatric Endocrinologist: Search the Pediatric Endocrine Society membership list.

Upcoming Camps: Directory of specialty camps for kids, including Diabetes Camps, Turner Syndrome Camps, and Transgender Youth and Teen Camps. Not run or endorsed by the Pediatric Endocrine Society.

Source: MHP-Nationwide
Last Updated: 9/14/2020
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
75 South Grand Avenue
Pasadena, CA 91105
Phone: 626-578-0833
Address:
75 South Grand Avenue
Pasadena, CA 91105
Phone: 626-578-0833
Toll Free Phone: 800-386-8233
Fax: 626-578-0823
Email: info@nucdf.org
Services Provided:

The goals of the National Urea Cycle Disorders Foundation (NUCDF) are:

  • To provide guidance and information to families and others affected by urea cycle disorders.    
  • To create a caring community, networking families together for support.    
  • To educate healthcare professionals on the identification, diagnosis and treatment of UCD.      
  • To stimulate and support research which leads to improved quality of life for today and a CURE for tomorrow.    
  • To increase public awareness on the existence of UCDs so that no child or adult ever goes undiagnosed.    
  • To educate legislators on the needs of children, adults and families affected by these rare disorders.
Source: MHP-Nationwide
Last Updated: 8/19/2020
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
7272 Greenville Avenue
Dallas, TX 75231
Phone: 214-373-6300
Address:
7272 Greenville Avenue
Dallas, TX 75231
Phone: 214-373-6300
Toll Free Phone: 888-242-2453
Services Provided: Information for individuals, families, and professionals regarding heart-related concerns. Includes general health information, information regarding specific conditions, and information about CPR and First Aid training.

The [https://www.heart.org/en/ American Stroke Association] is a division of the American Heart Association focused on stroke prevention and treatment.
Source: Nationwide Suggest Providers Queue
Last Updated: 2/7/2020
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
141 Northwest Point Blvd
Elk Grove Village, IL 60007-1098
Phone: 847-434-4000
Address:
141 Northwest Point Blvd
Elk Grove Village, IL 60007-1098
Phone: 847-434-4000
Fax: 847-434-8000
Services Provided: Professional association dedicated to the health, safety, and well-being of all infants, children, adolescents, and young adults.
Source: MHP-Nationwide
Last Updated: 1/10/2020
42-40 Bell Blvd Suite 205
Bayside, NY 11361-2820
Phone: 718-224-2999
Address:
42-40 Bell Blvd 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: 8/18/2020
Organization Name: Bradley Hospital
(Show others in Organization)
Address:
Outpatient Services
1011 Veterans Memorial Parkway
East Providence, RI 02915
Phone: 401-432-1119
Eligibility: ages 5-21
Services Provided: Outpatient care for specialized behavioral health needs of individuals ages 5-21 with developmental challenges , including Autism Spectrum Disorders, anxiety,mood dysregulation,ADHD,adjustment problems,aggression and oppositional behavior as well as challenges to parents and families. The clinic offers Individual Therapy, Family Therapy, Parent Training in behavior management, group therapy, Medication management, psychiatric consultation, and genetic psychiatry consultation
Provider Profiles: Clinical staff includes:
psychologists
social worker
psychiatrists
Source: Rhode Island Dept of Health, Office of Special Needs
Last Updated: 3/19/2019
15 South Mallory Avenue
Batavia, IL 60510
Phone: 630-360-2087
Address:
15 South Mallory Avenue
Batavia, IL 60510
Phone: 630-360-2087
Email: info@hcunetworkamerica.org
Services Provided:

Resources, information, research information, and support for HCU.

Source: MHP-Nationwide
Last Updated: 8/19/2020
Haworth Hall, Room 313
1200 Sunnyside Avenue
Lawrence, KS 66045-7534
Phone: 785-864-7600
Organization Name: University of Kansas
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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
Organization Name: The Autism Project
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Address:
1516 Atwood Avenue
Johnston, RI 02919
Phone: 401-785-2666
Fax: 401-785-2272
Wheelchair Access: Yes
Eligibility: All are welcome.
Services Provided:
  • Professional Training Program, classroom and individual consultation
  • Parent Education Series and Support
  • Grandparent Support Groups
  • Social Skill Groups
  • Summer Camp
  • Advocacy
Provider Profiles:

The Autism Project is a ‘Hub of Hope’ that connects people—with a spectrum of needs—to the available resources and education that support independent and purposeful lives.
Autism Project
1516 Atwood Avenue
Johnston, RI 02919

Source: Rhode Island Dept of Health, Office of Special Needs
Last Updated: 9/29/2020
Organization Name: Hasbro Children's Hospital
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Address:
Potter Building
593 Eddy Street
Providence, RI 02903
Phone: 401-444-8638
Eligibility: ages 6-18 , referred by physician or sub-specialist
Services Provided: Pediatric and nursing monitoring
Individual and family therapy
Nutritional services
Group therapy
Instruction in a skills-building curriculum focused on mindfulness, cognitive and behavioral coping strategies, and healthy emotional expression
90 minutes daily of educational programming, coordinated with home schools
Involvement with physical therapy, occupational therapy, speech therapy, and biofeedback as indicated
Provider Profiles: Our partial hospital program addresses the needs of 6-to 18-year-olds with the same range of diagnoses treated on the inpatient unit. Diagnoses may include gastrointestinal illnesses, eating disorders, diabetes, asthma, seizures, pain syndromes, somatoform disorders, and complex presentations needing diagnostic evaluations.

These children may not require an inpatient stay, but do require a high level of support due to impaired functioning in the home and school settings and/or limited response to outpatient intervention. Some patients may step down to the partial program after a stay as an inpatient, while others at high risk for hospitalization may be able to avoid an inpatient stay by participating.

The program is located in newly renovated and expanded space in the Potter Building, on the Hasbro Children’s/Rhode Island Hospital campus. Children spend an average of three to four weeks in the program, arriving Monday through Friday at 7:30 a.m. and leaving at 3:30 p.m. Breakfast, lunch and snacks are served. Children receive daily pediatric and psychiatric assessment and treatment.
Source: Rhode Island Dept of Health, Office of Special Needs
Last Updated: 1/12/2018
108 NE 2nd St
PO Box 510
Concordia, MO 64020
Phone: 660-463-1355
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
Address:
6801 Washington Ave S, Suite 200
Minneapolis, MN 55349
Phone: 866-354-3254
Toll Free Phone: 800-328-8602
Fax: 952-828-6900
Email: info@starkeyfoundation.org
Eligibility: Based on income and assets
Services Provided: Starkey Hearing Foundation uses the gift of hearing to reflect caring and sharing and improve the lives of individuals, families and communities.

  • Hearing Aids
Source: Nationwide Suggest Providers Queue
Last Updated: 11/6/2020
CB 8180
Chapel Hill, NC 27599-8180
Phone: 919-966-2622
Organization Name: University of North Carolina at Chapel Hill
(Show others in Organization)
Address:
CB 8180
Chapel Hill, NC 27599-8180
Phone: 919-966-2622
Services Provided: Enhances the lives of children and families through interdisciplinary research, technical assistance, professional development, and implementation science. FPG is one of the nation's oldest and largest multidisciplinary centers devoted to the study of young children and their families. About 275 researchers, implementation and technical assistance specialists, staff, and students work on more than 75 projects related to developmental disabilities; early care and education; physical and social health; professional development, technical assistance, and implementation science; public policy and evaluation; and racial, ethnic, linguistic, cultural, and socioeconomic diversity.
Source: Medical Home Portal
Last Updated: 1/10/2019
Hasbro Hospital Lower Level
593 Eddy Street
Providence, RI 02903
Phone: 401-444-6540
Organization Name: Hasbro Children's Hospital
(Show others in Organization)
Address:
Hasbro Hospital Lower Level
593 Eddy Street
Providence, RI 02903
Phone: 401-444-6540
Fax: 401-444-6543
Services Provided: The Pediatric Pulmonary Medicine Division at Hasbro Children's Hospital.
Services:
Cystic Fibrosis Center
Flexible Bronchoscopy Service
General Pediatric Pulmonary
Pulmonology Function Test Lab
Ventilator Integration Program (VIP)
We consult and provide health care for children with a range of acute and chronic respiratory conditions, including:

Asthma
Bronchopulmonary dysplasia
Chronic cough
Congential lung and airway abnormalities
Cystic fibrosis
Interstitial lung disease
Obstructive sleep apnea
Primary ciliary dyskinesia
Respiratory disease associated with gastroesophageal reflux
Respiratory disease associated with neurological and neuromuscular disorders
Sickle cell lung disease
Tracheostomy
Ventilator dependence
Vocal cord dysfunction
Provider Profiles: We consult and provide health care for children with a range of acute and chronic respiratory conditions.
The Cystic Fibrosis Center is certified by the Cystic Fibrosis Foundation.
Additional Office Locations
East Greenwich Specialty Clinic
1454 South County Trail
East Greenwich, RI 02818
and
East Providence Offices
900 Warren Avenue
East Providence, RI 02914
Source: Rhode Island Dept of Health, Office of Special Needs
Last Updated: 12/14/2018
401 Hackensack Avenue, 9th Floor
Hackensack, NJ 07601
Phone: 201-250-8440
Address:
401 Hackensack Avenue, 9th Floor
Hackensack, NJ 07601
Phone: 201-250-8440
Toll Free Phone: 800-714-5437
Fax: 201-250-8435
Email: info@parentprojectmd.org
Services Provided: 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: 5/9/2019
6520 North Andrews Avenue
Fort Lauderdale, FL 33309-2132
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
108 West 39th Street, Suite 805
New York, NY 10018
Phone: 6463660830
Address:
108 West 39th Street, Suite 805
New York, NY 10018
Phone: 6463660830
Email: customerservices@additudemag.com
Services Provided: Online resources and information related to Attention Deficit Hyperactive Disorder (ADD and ADHD) for children, adults, parents, schools, and more.
Source: Nationwide Suggest Providers Queue
Last Updated: 4/14/2020
39252 Winchester Road, #107-135
Murrieta, CA 92563
Phone: 918-490-3055
Address:
39252 Winchester Road, #107-135
Murrieta, CA 92563
Phone: 918-490-3055
Services Provided:

Connecting Families UCD Foundation provides resources, information, and support groups for families and individuals with Urea cycle disorders (UCDs).

UCD Family Camps: Connecting Families UCD Foundation hosts annual camps for families affected by a Urea Cycle Disorder. UCD Family Camps are held in different locations across the US so that all families around the country may have an opportunity to attend. Camps are 100% free of charge to UCD families and siblings (any age). All costs of foods (low-pro), lodging, and shuttling to and from airport to camp site is provided as well.

Source: MHP-Nationwide
Last Updated: 8/19/2020
PO Box 54
Okemos, MI 48805-0054
Phone: 517-381-1940
Address:
PO Box 54
Okemos, MI 48805-0054
Phone: 517-381-1940
Fax: 866-290-5206
Services Provided:

Support group for Fatty Oxidation Disorders. Raises funds for Educational and Networking Services and Programs. Medical information, including information about newborn screening, and support resources.

Source: MHP-Nationwide
Last Updated: 8/19/2020
55 East Jackson Blvd., Suite 490
Chicago, IL 60604
Phone: 800-826-3632
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
Address:
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06810
Phone: 203-744-0100
Toll Free Phone: 800-999-6673
Fax: 203-263-9938
Languages Spoken: Spanish
Eligibility: Persons with a rare disease, financial need.
Services Provided: A patient advocacy organization for individuals with rare diseases and the organizations that serve them. NORD provides Patient Assistance Programs that provide financial assistance. In addition, NORD provides links to other financial assistance resources.
Patient Assistance Program, RareCare, provides medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.
Source: MHP-Nationwide
Last Updated: 9/12/2019
806 West Adams Boulevard
Los Angeles, CA 90007
Phone: 213-748-5481
Address:
806 West Adams Boulevard
Los Angeles, CA 90007
Phone: 213-748-5481
Fax: 213-749-1651
Eligibility: Infants and preschool children with hearing loss.
Services Provided: A leading diagnostic and education center for young children with hearing loss. It provides free, parent-centered services. The Clinic offers worldwide family services, local family services, professional education, preschool, and hearing testing. The Clinic has over 60 years of expertise in the spoken language option, called "oralism," serving 25,000 families each year.

Hearing Screening
Parent Support Groups
Preschools
Online courses
Source: Nationwide Suggest Providers Queue
Last Updated: 8/7/2019
JDRF View on Map
200 Vesey Street, 28th Floor
New York, NY 10281
Phone: 800-533-2873
Address:
200 Vesey Street, 28th Floor
New York, NY 10281
Phone: 800-533-2873
Fax: 212-785-9595
Email: info@jdrf.org
Services Provided: JDRF's (formerly Juvenile Diabetes Research Foundation) primary objective is to fund research into Type 1 diabetes.
Also provides:
•Informational Guides
•Virtual community
•Local chapters
•Fundraising and social events
Source: Nationwide Suggest Providers Queue
Last Updated: 1/3/2020
Organization Name: Hasbro Children's Hospital
(Show others in Organization)
Address:
P.O. Box 122
593 Eddy Street
Providence, RI 02903
Phone: 401-444-7563
Fax: 401-444-7018
Eligibility: If you are 13-18 years old and live with a chronic medical illness, you may be eligible to join TALC! We accept new TALC members year round.
Services Provided: The Adolescent Leadership Council ( TALC) ages 13-18 The Adolescent Leadership Council (TALC) strives to prepare teenagers for the transition to adulthood and independence by providing them with mentors they can relate to. Meets monthly during school year plus a yearly overnight summer leadership camp and other events.
TALC Jr. TALC Jr. is a program for 8 to 12 year olds and their parents that meets every other month throughout the school year. TALC Jr. has the same goals as TALC but is for younger kids. Some of the teens in TALC act as mentors for TALC Jr

TALC Parent Council - focuses on a topic related to their child’s chronic illness. The group is facilitated by medical residents. At least one college age mentor (who lives with a chronic illness) joins the parent group every month to give the perspective of a young adult who has an illness and has recently transitioned from high school to college.
Provider Profiles: Transitioning from childhood to being a teenager, to the independence of young adulthood is challenging. Consider what it would be like to cope with typical teen angst and have to manage a chronic illness as well.
For teens with a variety of chronic medical conditions such as asthma, diabetes, lupus, cancer, sickle cell anemia, Crohn’s disease, and epilepsy, they don’t have to do it alone. The Adolescent Leadership Council (TALC) provides a forum for adolescents ages 13-18 who are managing a chronic illness to interact with peers who are going through similar experiences and to meet college-age mentors who also have a chronic illness. Through programming, TALC members gain insights and perspective along with the confidence and advocacy skills needed to navigate their medical circumstance in the short- and long-term.
TALC teens meet monthly during the academic year, participate in social and art-related events, attend an annual team-building retreat and an annual overnight summer leadership camp. TALC also serves as the official “Youth Advisory Council” for the hospital.
Source: Rhode Island Dept of Health, Office of Special Needs
Last Updated: 10/15/2018
5420 S. Quebec Street, Suite 135
Greenwood Village, CO 80111
Phone: 303-794-1182
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
8301 Professional Place West, Ste 230
Landover, MD 20785-2356
Phone: 301-459-3700 Crisis Line: 800-332-1000
Address:
8301 Professional Place West, Ste 230
Landover, MD 20785-2356
Phone: 301-459-3700
Crisis Line: 800-332-1000
Toll Free Phone: 800-332-1000
Fax: 301-577-2684
Email: ContactUs@efa.org
Wheelchair Access: Full Wheelchair Access
Languages Spoken: Spanish
Eligibility: Individuals with epilepsy, their families and friends.
Services Provided:

Provides information, advocacy, and assistance finding doctors, legal assistance, support groups and transportation reimbursement. Learn about epilepsy, types of seizures, triggers, diagnosis, treatment, etc. Offers a seizure diary app self-management tool.

Spanish-language line: 866-748-8008

Source: Nationwide Suggest Providers Queue
Last Updated: 10/30/2020
P.O. Box 424049
Washington, DC 20042-4049
Phone: 800-634-8978
Address:
P.O. Box 424049
Washington, DC 20042-4049
Phone: 800-634-8978
Toll Free Phone: 800-634-8978
Eligibility: People with tinnitus, their families and health care professionals, and the public.
Services Provided:

The American Tinnitus Association (ATA) is the national champion of tinnitus awareness, prevention, and treatment. Under its guiding principles - Education, Advocacy, Research, and Support - the ATA offers prevention programs in schools, urges governmental and private organizations to support hearing conservation, funds the nations brightest researchers, and facilitates self-help groups around the country.

Source: Nationwide Suggest Providers Queue
Last Updated: 9/4/2020
9517 Big Bear Ave
Powell, OH 43065
Phone: 740-972-5619
Address:
9517 Big Bear Ave
Powell, 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.

The MSUD Family Support Group is dedicated to:
• 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: 1/24/2020
Organization Name: RI Department of Health
(Show others in Organization)
Address:
3 Capitol Hill
Providence, RI 02908
Phone: 401-222-5954
Toll Free Phone: 401-222-5954
Eligibility: Middle School and High School and young adults
Services Provided: Trainings
State wide youth led conference with national speakers
Provider Profiles: Dare to Dream Initiative provides opportunities for youth with special needs to develop skills, relationships and leadership ability. The Dare to Dream Initiative provides a framework for local community groups and schools to receive technical assistance to start Dare to Dream clubs and to develop Dare to Dream workshops. The workshops highlight strategies that help prepare students for college, career and independent living.
Source: Rhode Island Dept of Health, Office of Special Needs
Last Updated: 7/1/2016
Address:
PO Box 5930
Midlothian, VA 23112
Phone: 800-366-7741
Toll Free Phone: 800-366-7741
Fax: 804-744-9388
Email: psiops@uneedpsi.org
Eligibility: Financial assistance for insured and uninsured patients with chronic illnesses.
Services Provided: Provides online disease and treatment information as well as financial assistance for patients with chronic illnesses who are struggling to keep up with expensive premiums and co-payments. Financial support and guidance available for qualified patients with specific, rare chronic diseases.

  • Medical Care Expense Assistance
  • Specialized Information and Referral
Provider Profiles:

Online resources

Source: MHP-Nationwide
Last Updated: 10/30/2020
Address:
110 West Road, Suite 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. Learn about primary immunodeficiencies, it's diagnosis, treatment; and living with PI, at different ages, getting support, finding a physician, insurance, school, etc.

IDF Physician Finder to locate a physician by location, last name, specialty and more.

  • Disease/Disability Information
  • Health/Disability Related Support Groups
Source: MHP-Nationwide
Last Updated: 10/30/2020
7240 Parkway Drive, Suite 180
Hanover, MD 21076
Phone: 410-528-1555
Address:
7240 Parkway Drive, Suite 180
Hanover, MD 21076
Phone: 410-528-1555
Toll Free Phone: 800-421-8453
Fax: 410-528-1495
Email: admin@sicklecelldisease.org
Services Provided: National nonprofit with chapters in multiple states. Supports research, public health education, professional health education, patient services, community services, and global organizations.
Provider Profiles: Mission: To advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.
Source: MHP-Nationwide
Last Updated: 1/6/2020
1805 Moriah Woods Blvd, Suite 3
Memphis, TN 38117
Phone: 901-761-0343
Address:
1805 Moriah Woods Blvd, Suite 3
Memphis, TN 38117
Phone: 901-761-0343
Toll Free Phone: 800-992-9392
Fax: 901-761-0484
Email: jwarner@tn.stutteringhelp.org
Wheelchair Access: Not Applicable
Services Provided:

The Stuttering Foundation provides resources, services and support to those who stutter and their families as well as support for research into the causes of stuttering.

Free packets of informative brochures, referral lists for fluency specialists and a catalog of resources are available.

The Foundation publishes 30 books, 41 DVD videos and 26 brochures on stuttering. Over 800,000 publications are distributed each year to those who stutter, their families, speech language pathologists, pediatricians, family physicians, clinics, day care centers, libraries and others concerned with the problem of stuttering.

Source: Nationwide Suggest Providers Queue
Last Updated: 9/30/2020
9609 Medical Center Drive
Bethesda, MD 20892-9760
Phone: 800-422-6237
Address:
9609 Medical Center Drive
Bethesda, MD 20892-9760
Phone: 800-422-6237
Email: NCIinfo@nih.gov
Wheelchair Access: Complete
Eligibility: None
Services Provided: A free public service providing the latest, most accurate cancer information for patients, their families, the general public, and health professionals in a personalized confidential manner.

  • Internet Information Resources
  • Disease/Disability Information
  • Specialized Information and Referral
  • Medical Information Services
Source: Nationwide Suggest Providers Queue
Last Updated: 10/30/2020
555 E. Wells Street, Suite 1100
Milwaukee, WI 53202
Phone: 414-918-3014
Address:
555 E. Wells Street, Suite 1100
Milwaukee, WI 53202
Phone: 414-918-3014
Fax: 414-276-2146
Email: info@aacpdm.org
Services Provided:

A multidisciplinary scientific society devoted to the study of cerebral palsy and other childhood onset disabilities, to promoting professional education for the treatment and management of these conditions, and to improving the quality of life for people with these disabilities.

AACPDM Medical Professional Directory offers patients and families the option to search for members by locations, specialty and/or patient type.

The website also offers continuing education for professionals and educational resources for individuals and families.

Source: MHP-Nationwide
Last Updated: 6/8/2020
Address:
2121 K Street NW, Suite 200
Washington, DC 20037
Phone: 202-349-1155
Toll Free Phone: 800-558-0121
Fax: 202-349-1156
Email: info@lupus.org
Services Provided:

Provides education and support services to people affected by lupus. We collaborate with experts to provide clear, easy-to-use information, programs and resources to help you navigate every step of your journey with lupus. An online community, an expert series, a resource database, a nurse and certified health educator call line.

Chapter Finder: Find support and connection in your community.

Source: MHP-Nationwide
Last Updated: 10/30/2020