Education About Disabilities/Diagnoses

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 )

If you know of a Service that should be listed but isn't, please Suggest a New Provider. If you find errors in a listing, please let us know by using the "Suggest an Edit" form on the provider's detail page.
Disclaimer...
Note: Service listings do not represent a recommendation or endorsement by the Medical Home Portal staff or its sponsoring organizations; nor do they reflect any assessment of the quality or value of a listed Service.

MT

Statewide

Organization Name: Nurse First
(Show others in Organization)
Address: Helena, MT
Phone: 800-330-7847
Toll Free Phone: 800-330-7847
Eligibility: Montana Medicaid or Healthy Montana Kids Member
Services Provided: Before you travel to your Primary Care Provider or the emergency room, call Nurse First to help you decide the best option or if you can treat the problem at home. Nurses at Nurse First may be able to help you save time and money by guiding you to the right care at the right place and at the right time.

The advice line is a 24 hour a day, 7 days a week, 365 days a year toll-free and confidential nurse triage line staffed by licensed-registered nurses.

Nurses can help you with problems like:
•Fever, earache, headache, flu, cold, cough, sore throat, vomiting, upset stomach, skin rash, back pain, a crying baby
•If you have just found out you have diabetes, heart disease, high cholesterol or any other health issue, the Nurse First Advice Line may be able to give you some information and help answer questions you have.
•Nurse First will help you with any health question/concern, such as:

You should NOT call Nurse First when:
•You have a life threatening health concern
•It’s time for your child’s next Well Child checkup or immunization
•You saw your PCP for a specific health problem and a follow-up appointment is needed
•You saw your PCP for a specific health problem and he referred you to a specialist
•You, or your child, need regular services such as transfusion or dialysis
Source: Montana Children's Special Health Services
Last Updated: 12/26/2019

Great Falls, MT

Address: Great Falls, MT
Services Provided: The Montana Association of the Deaf (MAD) was founded in Boulder, Montana, June 1912 by twenty-four deaf individuals. At first, the purpose of setting up an organization was a social gathering for deaf people who were isolated in their hometowns near and far and they needed communication. Some years later MAD became involved in advocacy for deaf people legally and economically.
Source: Montana Suggest Provider Queue
Last Updated: 8/28/2018

Nationwide

555 E. Wells Street, Ste 1100
Milwaukee, WI 53202
Phone: 414-918-3014
Address: 555 E. Wells Street, Ste 1100
Milwaukee, WI 53202
Phone: 414-918-3014
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.
Source: Medical Home Portal
Last Updated: 3/22/2018
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
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
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
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
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
Haworth Hall, Room 313
1200 Sunnyside Avenue
Lawrence, KS 66045-7534
Phone: 785-864-7600
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
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: Centers for Disease Control and Prevention
(Show others in Organization)
Address: 1600 Clifton Road
Atlanta, GA 30333
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: 1/24/2020
Address: 4550 Montgomery Avenue, Suite 1100 N
Bethesda, MD 20814
Phone: 301-951-4422
Toll Free Phone: 800-344-4823
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
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
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
8301 Professional Place East, Ste 230
Landover, MD 20785-2356
Phone: 301-459-3700 Crisis Line: 800-332-1000
Address: 8301 Professional Place East, Ste 230
Landover, MD 20785-2356
Phone: 301-459-3700
Crisis Line: 800-332-1000
Toll Free Phone: 800-332-1000
Email: ContactUs@efa.org
Eligibility: Individuals with epilepsy, their families and friends.
Wheelchair Accessible: Full Wheelchair Access
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
Provider Profiles: Spanish Speakers Phone number: 866-748-8008
Source: Nationwide Suggest Providers Queue
Last Updated: 1/24/2020
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
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
Organization Name: Starkey Hearing Foundation
(Show others in Organization)
Address: 6801 Washington Ave S, Suite 200
Minneapolis, MN 55349
Phone: 800-328-8602
Toll Free Phone: 800-328-8602
Email: hearnow@starkeyfoundation.org
Eligibility: Deaf or hard of hearing; Low income adults or children at or below 175% poverty + asset test
Services Provided: A national nonprofit program committed to assisting those who are deaf or hard of hearing and have no other resources to acquire hearing aids.

Also accepts donation of used hearing aids.
Source: Nationwide Suggest Providers Queue
Last Updated: 1/24/2020
Address: 110 West Road Ste 300
Towson, MD 21204
Phone: 800-296-4433
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.
Source: MHP-Nationwide
Last Updated: 1/6/2020
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
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
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
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
Address: 2121 K Street NW, Suite 200
Washington, DC 20037
Phone: 202-349-1155
Toll Free Phone: 800-558-0121
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.
Source: MHP-Nationwide
Last Updated: 8/6/2019
24 South 1100 East, Suite 205
Salt Lake City, UT 84102
Phone: 801-328-8080
Organization Name: Bateman Horne Center of Excellance
(Show others in Organization)
Address: 24 South 1100 East, Suite 205
Salt Lake City, UT 84102
Phone: 801-328-8080
Email: support@batemanhornecenter.org
Eligibility: None
Wheelchair Accessible: Complete
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.
Provider Profiles: Lucinda Bateman M.D.
Source: Nationwide Suggest Providers Queue
Last Updated: 3/21/2019
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
Address: 375 Kings Highway North
Cherry Hill, NJ 08034
Toll Free Phone: 800-532-7667
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
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 Accessible: 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
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: cancergovstaff@mail.nih.gov
Eligibility: None
Wheelchair Accessible: Complete
Services Provided: A free public service of the National Cancer Institute providing the latest most accurate cancer information for patients, their families, the general public, and health professionals in a personalized confidential manner.
Source: Nationwide Suggest Providers Queue
Last Updated: 1/6/2020
31 Center Dr, MSC 2510
Bethesda, MD 20892-2510
Phone: 301-496-5248
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: 1/24/2020
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: 7/30/2019
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: 1/7/2020
Address: 55 Kenosia Avenue
PO Box 1968
Danbury, CT 06810
Phone: 203-744-0100
Toll Free Phone: 800-999-6673
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
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
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
Address: PO Box 5930
Midlothian, VA 23112
Phone: 800-366-7741
Toll Free Phone: 800-366-7741
Email: psiops@uneedpsi.org
Eligibility: Financial assistance for insured and uninsured patients with chronic illnesses. Assistance is focused on a limited number of around 20 diseases, and the list always changes.
Services Provided: Provides online disease and treatment information as well as limited financial assistance for patients with chronic illnesses who are struggling to keep up with expensive premiums and copayments. Available programs and specific illnesses are regularly updated. Financial assistance includes: subsidizing the cost of health insurance premiums; providing pharmacy and treatment copayment assistance; assisting with Medicare Part D co-insurance; providing travel assistance for transportation reimbursement.
Provider Profiles: Online resources
Source: MHP-Nationwide
Last Updated: 7/11/2019
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
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
Organization Name: The Childhood RND Educational Foundation, Inc
(Show others in Organization)
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: 2/26/2020
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
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.

[https://tourette.org/find-a-provider/ Find a Provider]: Directory of experts in Tourette Syndrome that can be filtered by age group, clinical expertise (specialty), and location.

[https://tourette.org/about-tourette/overview/centers-of-excellence/center-excellence-locations/ 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: 2/4/2020