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.

NV

Carson City, NV

Address:
1000 East William Street
Suite 100
Carson City, NV 89701
Phone: 775-687-0587
Fax: 775-687-0599
Email: projectassist@dhhs.nv.gov
Services Provided: Nevada's Central Directory for Early Intervention provides information, resources, and referral services to inform and educate families of infants and toddlers with disability, disabilities or special health care needs, and the general public.
Source: Nevada 2-1-1
Last Updated: 5/5/2020

Elko, NV

Address:
525 Sunset Street
Elko, NV 89801
Phone: 775-738-9251
Services Provided: Diabetes prevention through walking club, nutrition programs, and exercise program.
Source: Nevada 2-1-1
Last Updated: 5/5/2020

Las Vegas, NV

6165 South Rainbow Boulevard
Unit 12
Las Vegas, NV 89118
Phone: 800-227-2345
Organization Name: American Cancer Society
(Show others in Organization)
Address:
6165 South Rainbow Boulevard
Unit 12
Las Vegas, NV 89118
Phone: 800-227-2345
Wheelchair Access: No
Eligibility: Persons with cancer.
Services Provided: Provides a nationwide, community-based, voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer and saving lives through research, education, advocacy, and service.
Source: Nevada 2-1-1
Last Updated: 1/23/2020
8990 Spanish Ridge Avenue
Suite 100
Las Vegas, NV 89148
Phone: 702-737-1919
Address:
8990 Spanish Ridge Avenue
Suite 100
Las Vegas, NV 89148
Phone: 702-737-1919
Fax: 702-792-2780
Services Provided: Educational, Emotional, and Financial Support to families who have a child diagnosed with cancer.
Source: Nevada Suggest Providers Queue
Last Updated: 2/21/2019
Address:
Las Vegas, NV
Phone: 702-723-2286
Services Provided:

Our mission is to #MakeSickleCellPopular by increasing awareness, educating, and advocating for long term changes for the SCD population of Nevada to improve Equity and access to care for those affected by SCD and other Rare Diseases while also addressing health disparities. 

Our vision is to be a community leader in advocating for those affected by Sickle Cell. Our vision will be achieved by bringing communities together through social events that provide support, education, resources and awareness for Sickle Cell Disease.

Source: NVDPBH Title V MCH - CYSHCN Program
Last Updated: 10/5/2020
Organization Name: JDRF Southern Nevada
(Show others in Organization)
Address:
5542 South Fort Apache Road
Las Vegas, NV 89148
Phone: 702-732-4795
Fax: 702-732-1635
Email: nevada@jdrf.org
Wheelchair Access: Yes
Services Provided: Provides networking and educational services including advocacy, research worldwide, fundraising activities, printed materials, brochures, and community outreach for type 1 diabetes.
Source: Nevada 2-1-1
Last Updated: 6/6/2019
5542 South Fort Apache Road
Suite 100
Las Vegas, NV 89148
Phone: 702-732-4795
Address:
5542 South Fort Apache Road
Suite 100
Las Vegas, NV 89148
Phone: 702-732-4795
Fax: 702-732-1635
Services Provided: Diabetes Research
Source: Nevada 2-1-1
Last Updated: 6/5/2019
Address:
3711 Sunset Road
Las Vegas, NV 89120
Phone: 702-735-8434
Fax: 702-735-8431
Email: info@nvccf.org
Source: Nevada Suggest Providers Queue
Last Updated: 10/5/2020
Organization Name: Nevada Hands and Voices
(Show others in Organization)
Address:
Las Vegas, NV
Phone: 702-363-3323
Email: info@nvhandsandvoices.org
Eligibility: Children ages birth to 21 with hearing loss or communication access issues.
Services Provided: Provides training and education seminars, methodology choices (hearing aids or cochlear implants), early intervention programs, and networks with parents whose children have hearing loss.
Source: Nevada 2-1-1
Last Updated: 5/13/2019
Organization Name: Southern Nevada Health District
(Show others in Organization)
Address:
280 South Decatur Boulevard
Las Vegas, NV 89107
Phone: 702-759-0800
Email: nursing@snhdmail.org
Wheelchair Access: Yes
Eligibility: Diagnosed with HIV.
Services Provided:

Offers confidential program that helps people HIV develop a plan to notify sex or needle partners about possible exposure; education on disease transmission and prevention; assist with eligibility for Ryan White program and linkage to HIV provider; offers nurse case management and HIV provider visits for up to six months.

Source: Nevada 2-1-1
Last Updated: 8/25/2020

North Las Vegas, NV

Organization Name: American Lung Association in Nevada
(Show others in Organization)
Address:
3552 West Cheyenne Avenue
North Las Vegas, NV 89032
Phone: 800-586-4872
Email: nvinfo@lungs.org
Wheelchair Access: Yes
Services Provided: Offers compassionate counseling by registered nurses, respiratory therapists, and certified tobacco treatment specialists.
Source: Nevada 2-1-1
Last Updated: 1/23/2020
Organization Name: Lupus of Nevada
(Show others in Organization)
Address:
Confidential
North Las Vegas, NV 89031
Phone: 702-595-0313
Email: calvinia2@cox.net
Wheelchair Access: Yes
Eligibility: Individuals with lupus.
Services Provided:

Provides awareness, education, nutrition, coping strategies, conferences and community outreach. Also offers referrals and educational information on Lupus.

Source: Nevada 2-1-1
Last Updated: 8/25/2020
Address:
North Las Vegas, NV
Phone: 702-417-3175
Email: info@sicklednotbroken.org
Services Provided:

SNBFON is a nonprofit organization within the NV sickle cell community. We believe at times our SC warriors may be weakened physically, mentally and spiritually but through a strong community-based organization they possess the ability to tap into strength, hope, faith. 

Our mission is to  improve not only the quality but quantity of life for children and adults living with Sickle Cell (SC) and related blood disorders. We desire for them to live longer and without limitations.

The effects of SC are also experienced by parents, family, friends, and community members. Therefore, we encourage participation from anyone with a passion and desire to grow and develop opportunities to decrease the stigmas & misunderstandings related to SC. 

A special focus is on the SC teen population who are transitioning to adult healthcare and the adult population currently struggling to access quality healthcare from providers knowledgeable in current evidence based SC treatments.

Source: NVDPBH Title V MCH - CYSHCN Program
Last Updated: 10/5/2020

Pahrump, NV

Organization Name: Nevada Council of the Blind
(Show others in Organization)
Address:
1370 West Basin Avenue
Pahrump, NV 89041
Phone: 702-383-0600
Email: rickthepolak@embarqmail.com
Eligibility: Visually impaired or friend/family of.
Services Provided:

Provides support, resources, open discussion, education about blindness, and scholarship opportunities for vision impaired. Meets at Pahrump Senior Center on the last Wednesday of each month.

Source: Nevada 2-1-1
Last Updated: 8/25/2020

Reno, NV

Organization Name: American Cancer Society
(Show others in Organization)
Address:
630 Sierra Rose Drive
Suite 1A
Reno, NV 89511
Toll Free Phone: 800-228-2345
Services Provided: Nationwide community-based voluntary organization dedicated to eliminating cancer as a major health risk through research, education, advocacy.
Source: Nevada Suggest Providers Queue
Last Updated: 6/5/2019
630 Sierra Rose Drive
Unit A
Reno, NV 89511
Phone: 800-227-2345
Organization Name: American Cancer Society
(Show others in Organization)
Address:
630 Sierra Rose Drive
Unit A
Reno, NV 89511
Phone: 800-227-2345
Eligibility: Persons with cancer.
Services Provided: Provides a nationwide, community-based, voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer and saving lives through research, education, advocacy, and service.
Source: Nevada 2-1-1
Last Updated: 1/23/2020
155 Country Estates Circle
Reno, NV 89511
Phone: 775-322-7065
Organization Name: American Heart Association
(Show others in Organization)
Address:
155 Country Estates Circle
Reno, NV 89511
Phone: 775-322-7065
Fax: 775-322-8959
Wheelchair Access: Yes
Services Provided: Provides community education through online access or brochures requested by phone on the warning signs of heart attacks and strokes, discussion topics such as nutrition, exercise, and tobacco use.
Source: Nevada 2-1-1
Last Updated: 6/6/2019
10615 Double R Boulevard
Suite 100
Reno, NV 89521
Phone: 775-829-5864
Organization Name: American Lung Association of Nevada
(Show others in Organization)
Address:
10615 Double R Boulevard
Suite 100
Reno, NV 89521
Phone: 775-829-5864
Toll Free Phone: 800-586-4872
Services Provided: Fights lung disease in all its forms, with special emphasis on asthma, tobacco control and environmental health.
Source: Nevada Suggest Providers Queue
Last Updated: 6/5/2019
55 Reactor Way
Reno, NV 89502
Phone: 775-829-7400
Organization Name: High Sierra Inudtries - Corporate Office
(Show others in Organization)
Address:
55 Reactor Way
Reno, NV 89502
Phone: 775-829-7400
Fax: 775-829-7403
Services Provided: HSI's mission is to research, develop, and implement evidence-based learning systems for people with disabilities and for those who support them. HS-WARC encourages every individual served to discover and lead a fulfilling and independent life. They do this by delivering the best training, development, and assessment services.
Source: Nevada Suggest Providers Queue
Last Updated: 2/21/2019
Organization Name: National Multiple Sclerosis Society
(Show others in Organization)
Address:
4600 Kietzke Lane
Reno, NV 89502
Phone: 775-329-7180
Fax: 775-201-1781
Email: linda.lott@nmss.org
Wheelchair Access: Yes
Eligibility: Individuals with MS and their friends/family.
Services Provided:

A statewide over the phone resource center for people with MS and friends/family. Provides comprehensive educational programs, financial assistance, support group information, and programs to help deal with MS.

Source: Nevada 2-1-1
Last Updated: 8/25/2020
Organization Name: Nevada Diabetes Association (NDA)
(Show others in Organization)
Address:
18 Stewart Street
Reno, NV 89501
Phone: 775-856-3839
Toll Free Phone: 800-379-3839
Fax: 775-348-7591
Services Provided: NDA offers services including camp, programs, diabetes awareness programs, information, English and Spanish material resources and referrals.
Source: Nevada Suggest Providers Queue
Last Updated: 6/5/2019
Address:
18 Stewart Street
Reno, NV 89501
Phone: 775-856-3839
Fax: 775-348-7591
Email: info@diabetesnv.org
Eligibility: Children ages 7 to 17 with type 1 diabetes.
Services Provided: Provides week long camps each year for children with diabetes. The camp goal is for these children develop the skills to take charge of their diabetes.
Source: Nevada 2-1-1
Last Updated: 11/18/2019
6490 South McCarran Boulevard
Reno, NV 89509
Phone: 775-351-1959
Organization Name: Nevada Hands and Voices
(Show others in Organization)
Address:
6490 South McCarran Boulevard
Reno, NV 89509
Phone: 775-351-1959
Email: info@nvhandsandvoices.org
Eligibility: Children ages birth to 21 with hearing loss or communication access issues.
Services Provided: Provides training and education seminars, methodology choices (hearing aids or cochlear implants), early intervention programs, and networks with parents whose children have hearing loss.
Source: Nevada 2-1-1
Last Updated: 8/30/2018

Sparks, NV

Sparks, NV
Phone: 775-453-9262
Organization Name: JUSTin HOPE Foundation
(Show others in Organization)
Address:
Sparks, NV
Phone: 775-453-9262
Email: justinhopefoundation@gmail.com
Eligibility: First responders.
Services Provided: Trains first responders on identifying the signs of autism and other related conditions. How to effectively interact with those individuals.
Source: Nevada 2-1-1
Last Updated: 4/14/2020
870 Steneri Way
Suite 101
Sparks, NV 89431
Phone: 775-453-9262
Organization Name: JUSTin HOPE Foundation
(Show others in Organization)
Address:
870 Steneri Way
Suite 101
Sparks, NV 89431
Phone: 775-453-9262
Email: info@justinhope.org
Eligibility: First Responders
Services Provided: We train community law enforcement and firefighters on learning the signs of Autism and other neurodevelopmental disorders. We provide them with tools they need to effectively interact with individuals with disabilities. We also maintain a Dispatch Registry that allows first responders to access pertinent information about the individual before responding to the emergency situation. 
Source: Nevada 2-1-1
Last Updated: 5/5/2020

Other

Organization Name: Head Injury Association of Northern Nevada
(Show others in Organization)
Address:
Phone: 775-830-4261
Email: info@hiann.org
Eligibility: Anyone with a traumatic or acquired brain injury , caregivers, family, friend, and professionals serving TBI clients
Services Provided:

Head Injury Association of Northern Nevada offers over 50 programs and events during the year, typically 4-6 per month, for our members. These services include cognitive training classes, physical fitness programs with personal trainers, art classes, yoga classes, trips to the Shakespeare Festival at Lake Tahoe, attending sporting events, and a variety of other educational and social activities. The cost of membership is $25 per year and all events are offered to members and their caregivers/family at no additional cost. Head Injury Association of Northern Nevada offers support services to traumatic brain injury survivors and their family at these events in various ways including discussions during selected meetings and introductions to Board Members with specific experiences in different areas of interest.&nbsp;<br />&nbsp;

Source: Nevada 2-1-1
Last Updated: 8/25/2020

NY

New York, NY

39 Broadway
New York, NY 10006
Phone: 800-465-4837
Organization Name: American Liver Foundation
(Show others in Organization)
Address:
39 Broadway
New York, NY 10006
Phone: 800-465-4837
Fax: 212-483-8179
Email: info@liverfoundation.org
Services Provided: Provides national helpline to answer questions about liver disease wellness and can help find resources such as specialists and support groups.
Source: Nevada 2-1-1
Last Updated: 5/4/2020

Nationwide

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
P.O. Box 4780
Rockville, MD 20849-6303
Phone: 800-448-0440
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: 9/4/2020
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
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
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
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
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
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
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
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: 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
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
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
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
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
Fax: 301-577-2684
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.

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
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
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
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
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
Fax: 952-947-4997
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
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.
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
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
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
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.
Source: MHP-Nationwide
Last Updated: 8/6/2019
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
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
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
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
Fax: (719) 776-3132
Email: cancergovstaff@mail.nih.gov
Wheelchair Access: Complete
Eligibility: None
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
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
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
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
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
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
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
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. 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
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:
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
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
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
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
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
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

TX

Dallas, TX

7272 Greenville Avenue
Dallas, TX 75231
Phone: 800-242-8721
Address:
7272 Greenville Avenue
Dallas, TX 75231
Phone: 800-242-8721
Email: strokeconnection@heart.org
Eligibility: Stroke patients.
Services Provided: Provides support and information for people who have suffered strokes.
Source: Nevada 2-1-1
Last Updated: 6/6/2019