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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:PAG0000251
To provide an emotional and communal support network for people touched by Acromegaly, offering medical information on surgery, medication, radiation, and post diagnosis support.
A Cure In Sight is an independent organization that provides support and resources for patients diagnosed with ocular melanoma, focusing on education, community support, and funding research for treatment advancements.
RDCP:PAG0000013
To support families affected by ADCY5-related movement disorder, encourage research, and collect information about this rare genetic condition.
The Adenoid Cystic Carcinoma Research Foundation (ACCRF) focuses on accelerating research and developing therapies for patients with adenoid cystic carcinoma, a rare cancer affecting secretory glands.
The ADNP Kids Research Foundation is dedicated to improving the lives of children and adults affected by ADNP Syndrome by funding research for treatments and a cure, while also providing support and advocacy for families.
RDCP:PAG0000252
To support individuals and caregivers affected by adrenal insufficiency, empowering them with education, resources, community building, and legislative advocacy.
The Adult Congenital Heart Association (ACHA) supports individuals with congenital heart disease by providing resources, information, and access to specialized care to improve patient outcomes.
AAIDA advocates for patients living with Primary Immunodeficiency, Secondary Immunodeficiency, and Autoimmune Diseases, focusing on awareness and research for these conditions.
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:PAG0000015
The ALD Alliance is a non-profit organization focused on supporting families affected by Adrenoleukodystrophy (ALD) through education, advocacy, and resources for newborn screening and family support.
ALD Connect is a non-profit organization dedicated to improving health outcomes for individuals affected by adrenoleukodystrophy (ALD) through patient empowerment, research advancement, and community support.
RDCP:PAG0000278
ALD Hope raises awareness and provides support for individuals and families affected by Adrenoleukodystrophy (ALD) and Addison's disease through financial assistance, educational resources, and advocacy for early detection.
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.
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