Connect with patient groups who understand your journey
Connect with organizations that understand your journey.
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Organizations keep their identity even when websites change.
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The Advocacy for Neuroacanthocytosis Patients supports individuals affected by neuroacanthocytosis, chorea-acanthocytosis, and McLeod Syndrome by facilitating research, providing personal support, and promoting communication among patients and families.
The African Americans with Ataxia Association (AAwAA) is a nonprofit organization dedicated to supporting individuals affected by Ataxia within the African American community through various support services.
Aislinn's Wish Foundation seeks to find a cure for Sanfilippo Syndrome, a rare genetic disorder.
RDCP:PAG0000014
To educate and empower the Hispanic community about rare diseases, providing culturally responsive resources, emotional support, and guidance.
RDCP:PAG0000253
To mobilize resources, facilitate connections, promote unity, and advocate for a cure to inspire, empower, and enrich the lives of people affected by Alagille Syndrome.
The Albinism Fellowship provides information, advice, and support for individuals with Albinism and their families, while also raising awareness about the condition.
RDCP:PAG0000278
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 Alexander Graham Bell Association supports children with hearing loss by providing resources, financial aid, and community connections to help families navigate their hearing journey.
All Things Kabuki is a patient advocacy organization focused on supporting individuals affected by Kabuki syndrome, providing information and resources related to the condition.
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.
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.
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.
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.
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