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Search 1,288 verified patient advocacy organizations — the community, research advocates, and family-support groups working on rare diseases.
Kisho provides public health information only — not medical advice. Always consult your healthcare provider.
RDCP:PAG0000295
Supports patients and families affected by leukodystrophies, including L-2-hydroxyglutaric aciduria, and promotes research in the field.
Alex, The Leukodystrophy Charity provides support and information to individuals affected by leukodystrophies, a group of genetic disorders affecting the central nervous system.
The Alliance to Cure Cavernous Malformation supports individuals affected by cavernous malformation (CCM), a blood vessel disorder of the brain and spinal cord, by providing resources, patient navigation, and facilitating research for better treatments.
All Things Kabuki is a patient advocacy organization focused on supporting individuals affected by Kabuki syndrome, providing information and resources related to the condition.
RDCP:PAG0000016
The Alpha-1 Foundation supports individuals affected by Alpha-1 Antitrypsin Deficiency through research funding, education, and community resources.
RDCP:PAG0000017
The Alport Syndrome Foundation supports individuals living with Alport syndrome through education, advocacy, and research initiatives.
RDCP:PAG0000008
The ALS Association is the only national nonprofit organization fighting ALS on every front.
The ALS Network provides support, advocacy, and resources for individuals and families affected by ALS, focusing on improving health outcomes and funding research for better treatments and cures.
The ALS Therapy Development Institute (ALS TDI) is a nonprofit biotech organization focused on discovering and developing effective treatments for ALS, driven by the experiences of people affected by the disease.
Alström Syndrome International is a nonprofit organization dedicated to supporting individuals and families affected by Alström Syndrome, focusing on community support and advancing research for better understanding and treatments.
Alström Syndrome UK provides support and information for individuals and families affected by Alström Syndrome, promoting awareness, research, and access to specialist care.
ALS United CT provides support and advocacy for individuals living with ALS in Connecticut, offering care services, research collaboration, and community events.
ALS United Mid-Atlantic provides care services, advocacy, and support for individuals and families affected by ALS in Pennsylvania, New Jersey, and Delaware.
ALS United Rocky Mountain is dedicated to combating Amyotrophic Lateral Sclerosis (ALS) by providing comprehensive care services, supporting individuals and families affected by ALS, and funding research initiatives across Colorado, Utah, and Wyoming.
RDCP:PAG0000018
The AHC Foundation is dedicated to supporting families affected by Alternating Hemiplegia of Childhood (AHC) through research funding, family support, and educational resources.
The Alzheimer's Association is dedicated to supporting individuals affected by Alzheimer's disease and other dementias through care consultations, support groups, and education programs, while also advocating for research and policy change.
The National Institute on Aging provides health information and research on healthy aging and common health conditions in older adults, including Alzheimer's disease.
Alzheimer's Disease International (ADI) supports and collaborates with Alzheimer and dementia associations globally, raising awareness and advocating for dementia as a global health priority.
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