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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.
The Asbestos Disease Awareness Organization (ADAO) is dedicated to raising awareness about the dangers of asbestos exposure and advocating for a global asbestos ban, supporting victims of asbestos-related diseases.
The Association for the Bladder Exstrophy Community (A-BE-C) is an international support network dedicated to providing resources, education, and support for individuals and families affected by bladder exstrophy.
ACD is a patient advocacy organization that supports families of children with disabilities by providing resources, workshops, and a support line.
The Association for Creatine Deficiencies (ACD) is dedicated to supporting families affected by Cerebral Creatine Deficiency Syndromes (CCDS) through education, advocacy, and funding medical research for treatments and cures.
AFTD provides support, resources, and information for families affected by frontotemporal degeneration (FTD), the most common form of dementia for people under 60.
The Association for Glycogen Storage Disease (AGSD) supports individuals and families affected by Glycogen Storage Disease (GSD) by providing information, resources, and hosting events to promote awareness and research.
AGSD-UK is a national support group for individuals affected by Glycogen Storage Disease (GSD) and their families, providing information, support, and opportunities for involvement in research and community activities.
AMEND is a patient advocacy organization that supports individuals affected by multiple endocrine neoplasia disorders and associated endocrine tumors by providing information, support services, and promoting awareness among healthcare professionals.
L'Association Francophone des Glycogénoses provides support and promotes research for individuals affected by glycogen storage diseases.
The Association of Gastrointestinal Motility Disorders provides education, resources, advocacy, and support for individuals affected by digestive motility disorders.
Ring14 Italia ODV advocates for families affected by Chromosome 14 Syndromes, providing support and resources to help them in their daily challenges.
AIMPS ETS supports families and children affected by mucopolysaccharidosis and related rare genetic metabolic disorders by providing information, facilitating experience sharing, and raising awareness.
The Asthma and Allergy Foundation of America (AAFA) supports families affected by asthma and allergies through education, advocacy, and research initiatives.
Asthma Canada is dedicated to helping individuals living with asthma through education, advocacy, and research, aiming to improve their quality of life and raise awareness about the disease.
RDCP:PAG0000024
The ARRE Foundation supports families affected by ASXL-related disorders through education, research collaboration, and community-building efforts aimed at improving care and advancing treatment options.
A-T Children's Project is dedicated to finding life-improving therapies and a cure for ataxia-telangiectasia (A-T) through funding innovative research and supporting families affected by the disease.
The AT Society supports people living with ataxia-telangiectasia (AT) and funds research to find a cure, while providing emotional and practical support for families affected by the condition.
The Australasian Blistering Diseases Foundation (ABDF) provides information and support to patients with rare auto-immune and hereditary blistering diseases, offering education, support groups, and funding for research.
The Autoimmune Association is a nonprofit organization dedicated to advocacy, awareness, education, and research for individuals living with autoimmune diseases, providing resources and support for patients and their families.
RDCP:PAG0000025
The Autoimmune Encephalitis Alliance supports individuals affected by autoimmune encephalitis through community building, research facilitation, and providing information on diagnosis and treatment options.
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