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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.
Cancer Nation advocates for quality cancer care for all individuals affected by cancer, providing resources and support for cancer survivors and their caregivers.
The National Council on Disability advises public policy to address the concerns of people with disabilities and has played a key role in the enactment of the Americans with Disabilities Act.
The National Deaf Children's Society supports deaf children and their families by providing resources, advice, and campaigning for better services and support in the community.
The National Disease Research Interchange (NDRI) is a not-for-profit organization that provides human organs and tissues from a diverse pool of donors to support biomedical research.
The National Down Syndrome Congress (NDSC) advocates for the rights and interests of individuals with Down syndrome, providing education, awareness, and support to empower families and communities.
The National Down Syndrome Society (NDSS) advocates for the rights, health, and well-being of individuals with Down syndrome.
The National Eczema Association provides support, resources, and advocacy for individuals affected by eczema, focusing on education, treatment options, and community engagement.
The National Federation of Families advocates for families affected by mental health and substance use disorders, providing support, resources, and technical assistance to enhance family well-being.
The National Foundation for Ectodermal Dysplasias (NFED) is dedicated to supporting individuals affected by ectodermal dysplasias, providing resources, advocacy, and funding for research related to these inherited disorders.
The National Gaucher Foundation empowers Gaucher patients through financial support, educational programming, and collaboration with medical professionals.
The National Headache Foundation advocates for individuals affected by headache disorders, providing resources for education, access to care, and support for patients and healthcare providers.
The National Alliance for Care at Home advocates for home health care, providing resources, education, and a network for home health, hospice, palliative, and home care professionals.
The National Initiative for Cockayne Syndrome (NICS) is dedicated to improving the quality of life for children and families affected by Cockayne Syndrome through medical education, early diagnosis, and research.
The National Institute of Environmental Health Sciences (NIEHS) conducts research on how environmental factors affect human health and aims to improve public health through scientific knowledge and outreach.
The National Keratoconus Foundation supports individuals affected by keratoconus through education, advocacy, and research initiatives.
The National Kidney Foundation supports patients and families living with kidney disease by providing resources, advocating for health policies, and funding research for better treatment and transplant access.
The National MALS Foundation is a nonprofit organization dedicated to providing hope and support to those suffering from Median Arcuate Ligament Syndrome (MALS) through advocacy, awareness, education, and research.
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The Marfan Foundation creates a brighter future for everyone affected by Marfan syndrome and related disorders.
NMDP (formerly Be The Match) is a nonprofit organization that saves lives through cell therapy, focusing on treating blood cancers and disorders by connecting patients with blood stem cell donors.
The National Mental Health Consumers’ Self-Help Clearinghouse is a peer-run resource center that supports individuals with mental health conditions by providing advocacy, self-help resources, and community inclusion services.
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