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.
Leukaemia Care is a UK charity that supports individuals affected by leukaemia and other blood cancers by providing emotional, financial, and practical support services.
Blood Cancer United is dedicated to supporting individuals affected by blood cancer through research, advocacy, and providing free resources and support from healthcare professionals.
Leukodystrophy Australia supports individuals and families affected by leukodystrophy, providing knowledge, advocacy, and connections to improve their quality of life.
The organization focuses on Lewy Body Dementia (LBD), providing resources and support for patients, caregivers, and healthcare professionals, as well as promoting clinical trials and research studies.
The LGMD2i Research Fund is dedicated to expediting the development of treatments and a cure for Limb Girdle Muscular Dystrophy 2I by supporting promising research projects and coordinating scientific efforts.
The LGMD Awareness Foundation is a non-profit organization dedicated to raising awareness and providing resources for individuals with limb-girdle muscular dystrophy (LGMD). They focus on advocacy, education, and support for the LGMD community.
RDCP:PAG0000137
The Lichen Sclerosus Support Network is an international non-profit organization that empowers individuals affected by Lichen Sclerosus through education, support, and community engagement.
The Life Raft Group supports patients with Gastrointestinal Stromal Tumor (GIST) and other rare diseases through patient-powered research, education, and advocacy efforts.
Life’sWork of Western PA is a nonprofit organization that empowers individuals with disabilities and other barriers to achieve independence and self-sufficiency through employment support services and life skills development.
Lifetime Advocacy Plus enhances the lives and protects the rights of people with significant life challenges through personal attention, advocacy, guardianship, and trust and financial management.
RDCP:PAG0000136
The LFS Association supports individuals and families affected by Li-Fraumeni syndrome by providing information, advocacy, and resources, while also promoting research and optimal care.
The Lilabean Foundation is dedicated to funding essential research for childhood brain cancer and raising awareness about the seriousness of this devastating disease.
Lipodystrophy United is dedicated to increasing awareness and understanding of lipodystrophy, providing support and resources for patients and healthcare professionals dealing with this condition.
Little Hearts, Inc. is a national organization dedicated to providing support, education, resources, networking, and hope to families affected by congenital heart defects.
Little People of America (LPA) is a nonprofit organization that provides support and information to individuals with dwarfism and their families.
RDCP:PAG0000138
The Living Bank provides education and advocacy services for living organ donation, aiming to eliminate the shortage of organs for lifesaving transplants.
This organization provides support, education, and advocacy for individuals with Klinefelter syndrome (XXY) and their families, aiming to change perceptions and improve awareness of the condition.
Locks of Love provides custom hair prosthetics to financially disadvantaged children suffering from hair loss, free of charge, and supports related medical research.
The Loeys-Dietz Syndrome Foundation provides information and support for individuals affected by Loeys-Dietz syndrome, focusing on education, community connection, and fundraising to support research and resources.
Run a patient organization? Claim your profile or register a new one.