Kisho is an information platform, not a medical provider. Nothing on this site constitutes medical advice, diagnosis, or treatment recommendations. All content is aggregated from publicly available sources (including ClinicalTrials.gov, PubMed, FDA.gov, and Orphanet) and is provided for informational purposes only. Clinical trial eligibility, treatment decisions, and any health-related actions should always be discussed with a qualified healthcare professional. Kisho does not endorse any specific therapy, organization, or clinical trial. Terms of use · Privacy policy
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 National Stem Cell Foundation supports research and education related to stem cells and advocates for children with rare diseases, aiming to speed research to cures and increase the donor pool for bone marrow transplants.
The American Stroke Association provides resources and support for stroke patients and caregivers, focusing on prevention, recovery, and education about stroke warning signs.
The National Stuttering Association supports people who stutter and their families by providing resources, support groups, and educational tools to foster a more accepting and understanding environment.
The National Tay-Sachs & Allied Diseases Association (NTSAD) supports families and advances research for Tay-Sachs, Canavan, GM1, and Sandhoff diseases through community engagement and collaboration.
The National Urea Cycle Disorders Foundation is dedicated to saving and improving the lives of individuals affected by urea cycle disorders through advocacy, research, and support services.
The National Vulvodynia Association is dedicated to improving the health and quality of life for women suffering from chronic vulvar pain, providing educational materials, support services, and resources for both patients and healthcare providers.
HealthyWomen is a nonprofit organization focused on educating and empowering women to make informed decisions about their health care, addressing various women's health issues.
RDCP:PAG0000164
The NBIA Disorders Association supports families affected by Neurodegeneration with Brain Iron Accumulation (NBIA) by providing education, resources, and funding for research.
The NDI Foundation supports education, research, treatment, and the search for a cure for Nephrogenic Diabetes Insipidus, serving patients, families, and healthcare providers.
The NEC Society is dedicated to understanding and preventing necrotizing enterocolitis (NEC) through research, education, and advocacy, supporting families and clinicians affected by this neonatal disease.
The NEHI Research Foundation works to improve the diagnostic process, find treatments, and ultimately cure all forms of Children’s Interstitial Lung Disease through research support and financial assistance to affected families.
RDCP:PAG0000165
NephCure is dedicated to supporting individuals affected by rare kidney diseases, such as FSGS and IgA nephropathy, by providing resources, advocacy, and funding for research aimed at improving treatments and finding a cure.
The Neuroendocrine Tumor Research Foundation is dedicated to advancing research and providing education and support for patients with neuroendocrine cancer.
Neuroacanthocytosis Advocacy USA, Inc. raises awareness of neuroacanthocytosis disorders, supports patients and caregivers, and fosters research into the causes, treatment, and cure of these diseases.
Neurofibromatosis Midwest is dedicated to improving the lives of individuals affected by neurofibromatosis through education, support, and funding research for treatments and a cure.
RDCP:PAG0000166
The NF Network is dedicated to serving the neurofibromatosis community by pursuing treatments and a cure for the disease.
Neurofibromatosis Northeast supports patients affected by neurofibromatosis and allied disorders through advocacy, research funding, and community resources.
NMSIS serves as an international resource center for knowledge on neuroleptic malignant syndrome and related heat-related disorders, providing educational support, research initiatives, and consultative services to improve patient safety.
The Neuromuscular Disease Foundation focuses on enhancing the quality of life for individuals living with GNE Myopathy by funding research for treatments and cures, as well as providing advocacy, education, and outreach.
NeuRA is an independent, not-for-profit medical research institute dedicated to improving the lives of people living with brain and nervous system disorders through world-class research and advocacy.
Run a patient organization? Claim your profile or register a new one.