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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 CAPRIN1 Foundation supports families affected by CAPRIN1-related disorders through research, education, and community connection.
RDCP:PAG0000037
CFC International aims to improve the quality of life for individuals with Cardiofaciocutaneous syndrome and their families through support, research, awareness, and education.
Cardiomyopathy UK is a patient advocacy organization that provides support, information, and resources for individuals affected by various types of cardiomyopathy, a group of heart muscle diseases.
The CARES Foundation supports individuals and families affected by Congenital Adrenal Hyperplasia (CAH) through education, advocacy, and resources.
The Carroll Center for the Blind provides a range of services for individuals who are blind or visually impaired, including rehabilitation programs for children, teens, adults, and seniors, as well as assistive technology and consulting services.
CASK Warriors Foundation is dedicated to accelerating research and providing gene therapy for children diagnosed with the ultra-rare CASK Gene Disorder, focusing on improving outcomes and finding a cure.
RDCP:PAG0000038
The Castleman Disease Collaborative Network (CDCN) is dedicated to accelerating research and treatment for Castleman disease, supporting patients on their journeys, and revolutionizing biomedical research for countless other diseases.
CESI onlus is a non-profit organization dedicated to supporting individuals affected by Cat Eye Syndrome and related malformations through patient help, family support, and awareness initiatives.
Cauda Equina Foundation, Inc. serves to improve the quality of life and care for individuals living with cauda equina syndrome and associated disorders.
RDCP:PAG0000039
CDH Research International is dedicated to stopping Congenital Diaphragmatic Hernia (CDH) by raising awareness, supporting patient families, and funding research for better treatments.
The Celiac Disease Foundation advocates for individuals affected by celiac disease, providing resources for education, research, and support to improve diagnosis and treatment.
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The Center for Chronic Illness promotes well-being and decreases isolation for those impacted by chronic illness through support and education, offering support groups and health education events.
CISCRP is a non-profit organization dedicated to engaging the public and patients as partners in the clinical research process, providing resources and services to enhance understanding and participation in clinical trials.
CIBMTR is dedicated to improving survival, treatment, and quality of life for patients through transformative research in cellular therapy, particularly in hematopoietic cell transplantation.
The CGD Society provides support, information, and advocacy for individuals and families affected by Chronic Granulomatous Disorder, while also funding a Clinical Nurse Specialist and raising awareness of the condition.
RDCP:PAG0000040
The CHAMP1 Research Foundation advocates for children affected by the rare genetic disorder CHAMP1, aiming to accelerate scientific research and discover treatments.
RDCP:PAG0000041
The Charcot-Marie-Tooth Association supports individuals affected by Charcot-Marie-Tooth disease (CMT) through research acceleration, patient empowerment, and community resources.
The CHARGE Family Support Group is a UK charity that provides support and resources for individuals and families affected by CHARGE Syndrome, aiming to create a positive network for sharing experiences and information.
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