Disease/Disability Information

Provide Feedback

Programs that provide information about the causes and origins, preventive measures, symptoms, screening/diagnostic procedures, and/or methods of treatment or management including the latest research for specific illnesses or disabling conditions. (AIRS LH-2700-1700)

Service Legend
Local Service
Statewide Service: Provides online resources, telehealth, or service at a satellite office.
Nationwide Service: Provides online resources, telehealth or services at a regional/national headquarters location.
Statewide Provider
Rhode Island College
600 Mount Pleasant Avenue
Providence, RI 02908
Phone: 401-456-8072
Statewide Provider
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 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) Dual Sensory, 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: 3/2/2022
Statewide Provider
1516 Atwood Avenue
Johnston, RI 02919
Phone: 401-785-2666
Statewide Provider
Organization Name: The Autism Project
(Show others in Organization)
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
  • Respite Information
  • Summer Camp WANNAGOAGAIN
  • Advocacy
  • Instructional videos
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: 9/26/2022
Coro W office 2048
593 Eddy Street
Providence, RI 02903
Phone: 401-444-7563
Organization Name: Hasbro Children's Hospital
(Show others in Organization)
Address:
Coro W office 2048
593 Eddy Street
Providence, RI 02903
Phone: 401-444-7563
Fax: 401-444-7563
Email: TALCProgram@gmail.com
Eligibility:

13-18 years old and live with a chronic medical illness. We accept new TALC members year round. Mentors age 18-22 and live with a chronic medical illness.

Services Provided:

TALC is a program for adolescents (age 13-18) who live with chronic  medical illness and their families.  We provide year-round programming focusing on support, advocacy, and healthcare transition skills.

  • Monthly Council Meetings for members
  • Parent Group
  • Mentors age 18-22
  • Leadership Opportunities TALC is also the official youth advisory council for Hasbro Children's Hospital. TALC members provide leadership to the hospital for issues related to the patient experience.  

See website for video of members explaining how the program works and why you should join TALC!

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.

Contact Erin Scott, TALC Program Coordinator, at erin.scott@lifespan.org

Source: Rhode Island Dept of Health, Office of Special Needs
Last Updated: 1/7/2022
Potter Building
593 Eddy Street
Providence, RI 02903
Phone: 401-444-8638
Organization Name: Hasbro Children's Hospital
(Show others in Organization)
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:

Partial Hospital Program link

Inpatient Hospital Program ages 12-17 link

Provider Profiles:

The Medical Psychiatric Program at Hasbro Children’s Hospital addresses the needs of children and adolescents who are struggling with psychiatric and medical illness at the same time. Patients we care for may have gastrointestinal illnesses, eating disorders, diabetes, asthma, seizures, pain syndromes, somatoform disorders, and complex presentations that require diagnostic evaluations.

Ours is the only program in the region designed to provide family-based integrated care for young people with these health challenges. Inpatient and partial hospital levels of care are available. 

Source: Rhode Island Dept of Health, Office of Special Needs
Last Updated: 6/2/2021
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:

Our specialists provide evaluation and treatment to children with a range of acute and chronic respiratory conditions, including:

  • Asthma
  • Cystic fibrosis
  • Bronchopulmonary dysplasia
  • Obstructive sleep apnea
  • Interstitial lung disease
  • Congenital lung and airway abnormalities
  • Respiratory disease associated with gastroesophageal reflux
  • Ventilator dependence
  • Tracheostomy
  • Primary ciliary dyskinesia
  • Sickle cell lung disease
  • Vocal cord dysfunction
  • Tracheomalacia
  • Respiratory disease associated with neurological and neuromuscular disorders
  • Chronic cough

We provide the following services:

Provider Profiles:

Information on members of the Pediatric Pulmonology Care Team Link 


The Cystic Fibrosis Center is certified by the Cystic Fibrosis Foundation.

Additional Office Locations

Lifespan Ambulatory Care Center
East Greenwich Specialty Clinic
1454 South County Trail
East Greenwich, RI 02818

East Providence Offices
900 Warren Avenue, Suite 201
East Providence, RI 02914

Source: Rhode Island Dept of Health, Office of Special Needs
Last Updated: 4/18/2022
Outpatient Services
1011 Veterans Memorial Parkway
East Providence, RI 02915
Phone: 401-432-1119
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: 5/31/2022
Statewide Provider
44 Bignall Street
Warwick, RI 02888
Phone: 401-941-8353 x124
Statewide Provider
Organization Name: West Bay Collaborative
(Show others in Organization)
Address:
44 Bignall Street
Warwick, RI 02888
Phone: 401-941-8353 x124
Email: tcurran@westbaycollaborative.org
Services Provided:

West Bay Regional Transition Center
Therese Curran
Director of Transition & Vocational Services
144 Bignall Street
Warwick, RI 02888
phone: 401-941-8353 x124
fax: 401-941-8535
email: tcurran@westbaycollaborative.org

Southern RI Regional Transition Center
Kerri Collins
Director of Regional Transition – Southern Region
859 Nooseneck Hill Road
West Greenwich, RI 02817
phone: 401-481-5161
email: kcollins@westbaycollaborative.org

Northern RI Regional Transition Center
Jennifer Doucette
Director of Regional Transition – Northern Region
51 Intervale Avenue
North Providence, RI 02911
phone: 401-465-2466
fax: 401-941-8535
email: jdoucette@westbaycollaborative.org

East Bay Regional Transition Center
Joanne DelAngelo, Coordinator
200 Metro Center Boulevard, Suite 5
Warwick, RI 02886
phone: 401-862-4133
email: jdelangelo@fedcap.org

Additional information on Rhode Island Secondary Transition and Employment First

link

Provider Profiles:

In order to assist Local Educational Agencies in meeting the secondary transition requirements, West Bay Collaborative maintains four Regional Transition Centers (RTCs). These centers assist middle and high schools regionally and statewide through coordination of the four Regional Transition Coordinators.

The services provided through the RTCs include service to public, non-public and charter schools serving youth eligible under IDEA (Individuals with Disabilities Education Act) and work in partnership with adult service agencies, higher education institutions, training programs, and parent advocacy organizations serving young adults with disabilities.

Source: Rhode Island Dept of Health, Office of Special Needs
Last Updated: 3/8/2021
Nationwide Provider
141 Northwest Point Blvd
Elk Grove Village, IL 60007-1098
Phone: 847-434-4000
Nationwide Provider
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
Nationwide Provider
31 Center Dr., MSC 2320
Bethesda, MD 20892
Phone: 800-241-1044
Nationwide Provider
Organization Name: National Institutes of Health
(Show others in Organization)
Address:
31 Center Dr., MSC 2320
Bethesda, MD 20892
Phone: 800-241-1044
TDD: 800-241-1055
Eligibility: communication disorders
Services Provided:

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

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

Serves children, individuals and families affected by Tourette Syndrome (TS) and other tic disorders. Provides comprehensive online information including 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: 9/14/2022
Nationwide Provider
55 East Jackson Blvd., Suite 490
Chicago, IL 60604
Phone: 800-826-3632
Nationwide Provider
Address:
55 East Jackson Blvd., Suite 490
Chicago, IL 60604
Phone: 800-826-3632
Toll Free Phone: 800-826-3632
Fax: 312-642-7243
Eligibility: Contact for specific information.
Services Provided: Educates patients, professionals, and the public concerning the nature of depressive, bipolar disorder (also known as manic depression) or mood disorder. Maintains over 1000 support groups around the country.
Provider Profiles: National
Source: MHP-Nationwide
Last Updated: 1/17/2020
Nationwide Provider
555 E. Wells Street, Suite 1100
Milwaukee, WI 53202
Phone: 414-918-3014
Nationwide Provider
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
Nationwide Provider
1963 McCraren Rd.
Highland Park, IL 60035
Nationwide Provider
Address:
1963 McCraren Rd.
Highland Park, IL 60035
Toll Free Phone: 877-720-2192
Email: paf@pafoundation.com
Services Provided:

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

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

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

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

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

The [https://www.cff.org/ccd/ CF Care Center] finder is a web-based location finder for cystic fibrosis accredited care centers nationwide. The Cystic Fibrosis Foundation provides funding for and accredits more than 110 cystic fibrosis care centers and 55 affiliate programs nationwide, including 96 programs for treating adults with CF.
Source: MHP-Nationwide
Last Updated: 2/7/2020
Nationwide Provider
5420 S. Quebec Street, Suite 135
Greenwood Village, CO 80111
Phone: 303-794-1182
Nationwide Provider
Address:
5420 S. Quebec Street, Suite 135
Greenwood Village, CO 80111
Phone: 303-794-1182
Fax: 303-322-5550
Services Provided:

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

Source: MHP-Nationwide
Last Updated: 6/8/2020
Nationwide Provider
Haworth Hall, Room 313
1200 Sunnyside Avenue
Lawrence, KS 66045-7534
Phone: 785-864-7600
Nationwide Provider
Organization Name: University of Kansas
(Show others in Organization)
Address:
Haworth Hall, Room 313
1200 Sunnyside Avenue
Lawrence, KS 66045-7534
Phone: 785-864-7600
Fax: 785-864-7605
Services Provided: The Beach Center on Disability is a multidisciplinary research and training center committed to making a significant and sustainable positive difference in the quality of life of individuals and families affected by disability and the professionals who support them. Internationally-recognized leaders in research on and interventions to promote the self-determination of children, youth, and adults with (and without) disabilities.
Provider Profiles: Based at the University of Kansas.
Source: MHP-Nationwide
Last Updated: 1/6/2020
Nationwide Provider
108 NE 2nd St
PO Box 510
Concordia, MO 64020
Phone: 660-463-1355
Nationwide Provider
Address:
108 NE 2nd St
PO Box 510
Concordia, MO 64020
Phone: 660-463-1355
Toll Free Phone: 866-303-2279
Email: info@fabry.org
Services Provided: Information about Fabry disease, support group, discussion page, information about research, links to resources, and more.
Source: MHP-Nationwide
Last Updated: 1/31/2020
Nationwide Provider
7240 Parkway Drive, Suite 180
Hanover, MD 21076
Phone: 410-528-1555
Nationwide Provider
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:

Supports research, public health education, professional health education, patient services, community services, and global organizations. National nonprofit with chapters in multiple states. 

Provider Profiles:

Advocates 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: 8/29/2022
Nationwide Provider
Campus Box 8180
Chapel Hill, NC 27599-8180
Phone: 919-966-2622
Nationwide Provider
Organization Name: University of North Carolina at Chapel Hill
(Show others in Organization)
Address:
Campus Box 8180
Chapel Hill, NC 27599-8180
Phone: 919-966-2622
Services Provided:

Offers support to 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.

Source: MHP-Nationwide
Last Updated: 9/1/2021
Nationwide Provider
6728 Old McClean Village Dr
Mclean, VA 22101
Phone: 703-718-6038
Nationwide Provider
Address:
6728 Old McClean Village Dr
Mclean, VA 22101
Phone: 703-718-6038
Email: info@pedsendo.org
Services Provided:

Online Resources Include:

  • A variety of clinical and patient resources
  • 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: 5/9/2022
Nationwide Provider
8301 Professional Place West, Ste 230
Hyattsville, MD 20785
Phone: 301-459-3700
Nationwide Provider
Address:
8301 Professional Place West, Ste 230
Hyattsville, MD 20785
Phone: 301-459-3700
Toll Free Phone: 800-332-1000
Email: ContactUs@efa.org
Wheelchair Access: Full Wheelchair Access
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.  Offers support groups for people with epilepsy.

Spanish-language line: 866-748-8008

Source: Nationwide Suggest Providers Queue
Last Updated: 6/17/2021
Nationwide Provider
PO Box 41514
Minneapolis, MN 55441
Phone: 800-328-8602
Nationwide Provider
Address:
PO Box 41514
Minneapolis, MN 55441
Phone: 800-328-8602
Toll Free Phone: 866-354-3254
Fax: 952-828-6900
Email: info@starkeyfoundation.org
Eligibility:

Based on income and assets

Services Provided:

Provides training and education on hearing, hearing loss, and hearing aids.

Source: Nationwide Suggest Providers Queue
Last Updated: 8/30/2022
Nationwide Provider
110 West Road Ste 300
Towson, MD 21204
Phone: 800-296-4433
Nationwide Provider
Address:
110 West Road Ste 300
Towson, MD 21204
Phone: 800-296-4433
Fax: 410-321-9165
Email: frontdesk@primaryimmune.org
Services Provided: A national patient organization dedicated to improving the diagnosis, treatment, and quality of life of persons with primary immunodeficiency diseases through advocacy, education, support groups, research, and information sharing.COVID-19 HOURS: Following all CDC and State guidelines.

  • Disease/Disability Information
  • Health/Disability Related Support Groups
Source: MHP-Nationwide
Last Updated: 4/7/2022
Nationwide Provider
24 South 1100 East, Suite 205
Salt Lake City, UT 84102
Phone: 801-359-7400
Nationwide Provider
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
Nationwide Provider
1600 Clifton Road
Atlanta, GA 30329-4027
Phone: 800-232-4636
Nationwide Provider
Address:
1600 Clifton Road
Atlanta, GA 30329-4027
Phone: 800-232-4636
TDD: 888-232-6348
Eligibility:

No restrictions

Services Provided: Protects America from health, safety, and security threats, both foreign and within the U.S. Conducts critical science and provides vital information that protects the nation against dangerous health threats, and responds to emergencies when they arise. Visit website for the most up to the minute information on COVID-19.COVID-19 UPDATE: The Vaccine Finder website is a free, online service where users can search for locations that offer vaccinations. The Website was developed by CDC and partners such as clinics, pharmacies, and health departments to provide accurate and up-to-date information about vaccination service. There is now a texting option and Hotline number in both English and Spanish for finding a vaccine. The Hotline number is in place to ensure that people who aren't online (as well as people who don't speak English or Spanish) have access to all the information they need.The CDC announced on August 3, 2021 a limited eviction moratorium, for renters living in communities experiencing substantial or high transmission of COVID-19, covering an estimated 80% of all US counties, and 90% of all renters through October 3, 2021.

  • Communicable Disease Control
  • Vaccine Information
Source: MHP-Nationwide
Last Updated: 4/7/2022
Nationwide Provider
9609 Medical Center Drive
Rockville, MD 20850
Phone: 800-422-6237
Nationwide Provider
Address:
9609 Medical Center Drive
Rockville, MD 20850
Phone: 800-422-6237
Email: nciinfo@nuh.gov
Wheelchair Access: Complete
Eligibility:

None

Services Provided: A free public service providing easy to understand, accurate, up-to-date, and reliable medical information services to answer cancer-related questions to patients, friends and family, healthcare providers, or researchers. Includes disease/disability information and answers clinical trial questions, internet information resources on how to find treatment, specialized information and referral, risk factors, symptoms, diagnostics, and treatments. Leads, conducts, and supports cancer research across the nation to help all people live longer, healthier lives.COVID-19 UPDATE: Following all CDC and State guidelines.

  • Internet Information Resources
  • Disease/Disability Information
  • Specialized Information and Referral
  • Medical Information Services
Source: Nationwide Suggest Providers Queue
Last Updated: 4/7/2022
Nationwide Provider
3104 E Boundary Ct
Midlothian, VA 23112
Phone: 800-366-7741
Nationwide Provider
Address:
3104 E Boundary Ct
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.COVID-19 UPDATE: Following all CDC and State guidelines.

  • Specialized Information and Referral
  • Medical Care Expense Assistance
Source: MHP-Nationwide
Last Updated: 4/7/2022
Nationwide Provider
3 Information Way
Bethesda, MD 20892-3580
Phone: 800-860-8747
Nationwide Provider
Organization Name: National Institutes of Health
(Show others in Organization)
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
Nationwide Provider
2121 K Street NW Ste 200
Washington, DC 20037
Phone: 202-349-1155
Nationwide Provider
Address:
2121 K Street NW Ste 200
Washington, DC 20037
Phone: 202-349-1155
Toll Free Phone: 800-657-6398
Fax: 202-349-1156
Email: info@lupus.org
Services Provided:

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

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

Chapter Finder: Find support and connection in your community.

Source: MHP-Nationwide
Last Updated: 4/22/2022
Nationwide Provider
7272 Greenville Avenue
Dallas, TX 75231
Phone: 214-373-6300
Nationwide Provider
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
Nationwide Provider
6520 North Andrews Avenue
Fort Lauderdale, FL 33309-2132
Nationwide Provider
Address:
6520 North Andrews Avenue
Fort Lauderdale, FL 33309-2132
Toll Free Phone: 800-225-6495
Wheelchair Access: Ramps
Services Provided:

Works 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: 9/10/2022
Nationwide Provider
250 Williams Street NW
PO Box 22478 | Oklahoma City | OK 73123
Atlanta, GA 30303
Phone: 800-227-2345
Nationwide Provider
Address:
250 Williams Street NW
PO Box 22478 | Oklahoma City | OK 73123
Atlanta, GA 30303
Phone: 800-227-2345
Toll Free Phone: 800-227-2345
Services Provided:

Nationwide community-based voluntary organization dedicated to eliminating cancer as a major health risk through research, education, advocacy.

Source: Nationwide Suggest Providers Queue
Last Updated: 4/7/2022
Nationwide Provider
6110 Executive Boulevard, Suite 305
Rockville, MD 20852
Phone: 301-657-0881
Nationwide Provider
Address:
6110 Executive Boulevard, Suite 305
Rockville, MD 20852
Phone: 301-657-0881
Toll Free Phone: 800-328-8476
Email: info@autism-society.org
Services Provided:

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

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

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

Services Include:

  • Individual Advocacy
  • Information and Referral
  • Equipment Distribution Program by application
Source: Nationwide Suggest Providers Queue
Last Updated: 4/25/2022
Nationwide Provider
PO Box 659
Paoli, PA 19301
Phone: 888-999-9428
Nationwide Provider
Address:
PO Box 659
Paoli, PA 19301
Phone: 888-999-9428
Email: info@genetic.org
Services Provided: Information about chromosome variation for for parents and parents-to-be, individuals, and medical professionals.

Services include:
-Helpline: 888-999-9428 or helpline@genetic.org
-Support meetings, conferences, and webinars
-Information about chromosome variations
-[https://genetic.org/professional-directory-info/ Professional Directory]
-[https://genetic.org/im-adult-looking-answers/clinics/ AXYS Clinic and Research Consortium] clinic list
-[https://genetic.org/im-adult-looking-answers/support-groups/ Support Groups]
Source: Nationwide Suggest Providers Queue
Last Updated: 2/7/2020
Nationwide Provider
1805 Moriah Woods Blvd, Suite 3
Memphis, TN 38117
Phone: 901-761-0343
Nationwide Provider
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
JDRF View on Map
Nationwide Provider
200 Vesey Street, 28th Floor
New York, NY 10281
Nationwide Provider
Address:
200 Vesey Street, 28th Floor
New York, NY 10281
Toll Free Phone: 800-533-2873
Email: info@jdrf.org
Services Provided:

Provides support and funding for type 1 diabetes research. Local JDRF chapter serves as the hub of JDRF information and events.

Services Include:

  • Informational Guides
  • Virtual community
  • Local chapters
  • Fundraising and social events
Source: Nationwide Suggest Providers Queue
Last Updated: 6/30/2022
Nationwide Provider
31 Center Dr, MSC 2510
Bethesda, MD 20892-2510
Phone: 301-496-5248
Nationwide Provider
Organization Name: National Institutes of Health
(Show others in Organization)
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
Nationwide Provider
Delaware, OH 43065
Phone: 740-972-5619
Nationwide Provider
Address:
Delaware, OH 43065
Phone: 740-972-5619
Eligibility:

Any persons with interest in MSUD

Services Provided:

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

Services Include:

  • Providing opportunities for support and personal contact for those with MSUD and their families.
  • Distributing information and raising public awareness of MS
  • Strengthening the liaison between families and professionals.
  • Encouraging newborn screening programs and research for MSUD.
Source: Nationwide Suggest Providers Queue
Last Updated: 9/1/2021
Nationwide Provider
PO Box 7762
Wilmington, DE 19803
Nationwide Provider
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
Nationwide Provider
108 West 39th Street, Suite 805
New York, NY 10018
Phone: 212-417-9700
Nationwide Provider
Address:
108 West 39th Street, Suite 805
New York, NY 10018
Phone: 212-417-9700
Toll Free Phone: 888-762-8475
Email: customerservices@additudemag.com
Services Provided:

Provides 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: 5/9/2022
Nationwide Provider
Nationwide Provider
Address:
Services Provided:

Provides 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: 5/9/2022
Nationwide Provider
39252 Winchester Road, #107-135
Murrieta, CA 92563
Phone: 918-490-3055
Nationwide Provider
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
Nationwide Provider
PO Box 54
Okemos, MI 48805-0054
Phone: 517-381-1940
Nationwide Provider
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
Nationwide Provider
15 South Mallory Avenue
Batavia, IL 60510
Phone: 630-360-2087
Nationwide Provider
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
Nationwide Provider
Nationwide Provider
Address:
Services Provided:

Information about PKU, research, advocacy, and resources.

Find a Clinic by state, zip code, or map.

Source: MHP-Nationwide
Last Updated: 8/19/2020
Nationwide Provider
75 South Grand Avenue
Pasadena, CA 91105
Phone: 626-578-0833
Nationwide Provider
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
Nationwide Provider
P.O. Box 4780
Rockville, MD 20849-6303
Phone: 800-448-0440
Nationwide Provider
Organization Name: National Institutes of Health
(Show others in Organization)
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: 11/4/2021
Nationwide Provider
P.O. Box 424049
Washington, DC 20042-4049
Phone: 800-634-8978
Nationwide Provider
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:

Provides 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: 8/30/2022
Nationwide Provider
P.O. Box 961029
Boston, MA 02196
Phone: 617-973-5801
Nationwide Provider
Address:
P.O. Box 961029
Boston, MA 02196
Phone: 617-973-5801
Services Provided:

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

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

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

Source: MHP-Nationwide
Last Updated: 4/22/2022
Nationwide Provider
Organization Name: Center for Disease Control and Prevention
(Show others in Organization)
Address:
1600 Clifton Road
Atlanta, GA 30329
Toll Free Phone: 800-232-4636
Services Provided:

Provides education for families in identifying development milestones in children from birth to 5 years old. Provides resources and supports (WIC, Early Childhood Intervention, Home-visiting, and Education Materials) for families who may have concerns and how to reach out to a local healthcare provider.

Source: Nationwide Suggest Providers Queue
Last Updated: 9/8/2022
Nationwide Provider
Nationwide Provider
Address:
Email: info@rubinetwork.org
Services Provided:

Involved in the research and development of evidence-based behavioral interventions and measurement tools designed to improve care for families and children with autism spectrum disorder (ASD). Also provides the RUBI Autism Network Parent Training program.

Source: MHP-Nationwide
Last Updated: 12/15/2021
Nationwide Provider
408 W Sussex Avenue
Missoula, MT 59801
Phone: 406-546-7380
Nationwide Provider
Address:
408 W Sussex Avenue
Missoula, MT 59801
Phone: 406-546-7380
Email: info@posture24-7.org
Services Provided:

Raises awareness of 24 hour posture care management, as a non-invasive, caregiver and family empowering approach improving the quality of life for persons with neuromuscular impairments affecting their motor control and posture. 

Provider Profiles:

Tamara Kittelson, MS, OTR/L, ATP/SMS
Executive and Project Director

Source: Nationwide Suggest Providers Queue
Last Updated: 9/25/2022