Provides critical research into diagnostics, treatments, and cures for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long Covid and other post-infection diseases.

Provide support, resources, education, and advocacy for those who are impacted by low vision and visual impairment.

People with physical or developmental disabilities, adults who are Deaf or hard of hearing, as well as professionals working in health care, visitation, educational or criminal justice settings who can demonstrate that a service dog will enhance their independence or their quality of life.

Trains service dogs for adults, children and veterans and facility dogs who work with professional in a visitation, education or healthcare setting. Training facility locations throughout the US.

Provides parents and expectant parents with information about birth defects and support services for their children; a parent-matching program that links families who have children with similar birth defects; sponsors the National Birth Defect Registry, a research project that studies associations between birth defects and exposures to radiation, medication, alcohol, smoking, chemicals, pesticides, lead, mercury, dioxin and other environmental toxins.

Promotes the interests of people with Down syndrome and their families through advocacy, public awareness, and information.

Services Include:

• programs and resources
• an adult sibling toolkit
• a family care toolkit
• an Ages & Stages development resource library
• healthcare and medical resources
• outreach and education including the Down Syndrome Summit and Parent Webinars
• policy and advocacy including the National Down Syndrome Advocacy Coalition and a tool kit for self-advocates
• an annual convention that includes a Kids' Camp

Promotes quality of life for people with ostomies and continent diversions through information, support, advocacy, and collaboration. Hosts a national network for bowel and urinary diversion support groups in the United States. 

Facilitates support groups for those with hereditary and sporadic ataxia. The Foundation also provides information about ataxia, current research activities and
a listing of neurologists in the United States who see patients with ataxia.

Family Support Centers/Outreach
Information and Referral
Support Groups

Patients, their families and caregivers, Myasthenia Gravis

Increase awareness of myasthenia gravis (MG), supports those living with MG and creates connections for the MG community.

Services Include:

• Adult Education
• Co-Parenting Workshops
• Individual Counseling
• Information and Referral
• Parent Support Groups
• Peer Counseling
• Support Groups
• Supported Living Services for Adults with Disabilities

Seeks to improve the health of babies by preventing birth defects and reducing infant mortality. Campaigns for Healthier Babies, which includes programs of research, community service, education and advocacy.

For parents of children with visual impairment.

Offers tele-support groups for parents of children with the following eye conditions:

• Cortical visual impairment
• Retinopathy of prematurity
• Leber congenital amaurosis
• Autism and blindness
• Hermansky-Pudlak syndrome (English and Spanish)
• CHARGE syndrome
• Albinism
• Rare eye conditions

Dedicated to improving the lives of everyone affected by Huntington's disease. From community services and education to advocacy and research.

Services Include:

• Information and Referral
• Library Services
• Peer Counseling

Supporting treatment and research for familial dysautonomia. FD is a hereditary disease of the sensory and autonomic nervous systems.

Information and Referral
Library Services

Provides information about Guillain-Barre Syndrome an inflammatory disorder in which the body's immune system attacks the nerves outside the brain and spinal cord; and Chronic Inflammatory Demyelinating Polyneuropathy (CID).

Services Include:

• Co-Parenting Workshops
• Family Support Centers/Outreach
• Parent Support Groups
• Peer Counseling

Provides free online resources, services and support to those who stutter and their families as well as support for research into the causes of stuttering.

Provides reproductive health care, sex education, and information. Provides information online and also through clinics and programs nationwide. Planned Parenthood Direct app provides access to birth control and UTI treatment in select states.

Patients and families of children with congenital heart disease.

Provides ongoing peer-to-peer support, education, and advocacy to heart patients and their families. Local chapter locator available on website.

Services Include:

• peer support and education
• education resources
• hospital outreach
• CHD awareness
• community health education
• online community
• advocacy

Provides information, advocacy, research, and referrals for individuals with multiple sclerosis and their families. Website includes a locator for local chapters, doctors, resources, and events.

Eligibility variable, based on household size, annual income, insurance coverage and US residency.

Helps patients and families facing high medical out-of-pocket costs by providing financial assistance for their copayments, coinsurance, deductibles, and other health-related expenses. More than 60 funds, each of which covers the FDA-approved medications that treat a specific disease, covering a wide range of serious and chronic diseases.

Individuals with spinal muscular atrophy (SMA)

Funds and directs comprehensive research that drives breakthroughs in treatment and care, and provides families the support they need. Local and national programs.

Services Include:

• An equipment pool loans medical equipment free of charge
• Annual conference
• Web-based location finder for support in your area

Siblings of individuals with disabilities

Provides siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families. Resources for siblings across the lifespan.

Chapter development inquiries: chapter.inquiries@siblingleadership.org