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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 Autoimmune Hepatitis Association provides education and support to patients and families affected by autoimmune hepatitis (AIH) while advancing research for better treatments.
RDCP:PAG0000026
The Autoinflammatory Alliance is a non-profit organization dedicated to promoting awareness, proper diagnosis, treatment, and improved care for individuals with autoinflammatory diseases.
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RDCP:PAG0000027
The Avalon Foundation supports pediatric patients with rare diseases by providing emotional support and resources, including customized care packages for children starting treatment for hypophosphatasia.
RDCP:PAG0000028
Canadian Health&Care Mall provides affordable access to a range of health products, including medications and health supplements, while promoting natural health and wellness through informational resources.
BackCare is dedicated to supporting individuals with back pain by promoting better back health and providing resources, including practitioner directories and educational materials.
The Bardet Biedl Syndrome Foundation is dedicated to improving the lives of individuals and families affected by Bardet Biedl Syndrome through advocacy, education, and support for research and therapies.
RDCP:PAG0000029
The Barth Syndrome Foundation is dedicated to saving lives through education, advancing treatments, and finding a cure for Barth syndrome, a life-threatening genetic disorder primarily affecting males.
RDCP:PAG0000272
RDCP:PAG0000030
BCM Families Foundation is dedicated to curing Blue Cone Monochromacy, a rare genetic retinal disorder, by providing therapy, research, and support services.
RDCP:PAG0000031
BDSRA is dedicated to funding research for treatments and cures for Batten disease, providing family support services, advancing education, raising awareness, and advocating for legislative action.
Bear Necessities Pediatric Cancer Foundation provides support and hope to children affected by pediatric cancer through holistic programs that address emotional, social, financial, and educational needs.
The Beck-Fahrner Syndrome Foundation is dedicated to supporting individuals and families affected by Beck-Fahrner syndrome, a rare genetic disorder, by providing information, resources, and fostering partnerships in the medical and scientific communities.
BOKS vzw is a volunteer organization that supports individuals with metabolic diseases by providing advocacy, information, and opportunities for connection among patients and their families.
The organization focuses on providing information and support for individuals affected by Benign Essential Blepharospasm (BEB), a neurological condition characterized by involuntary eyelid closure.
The BEBRF is dedicated to researching the causes and treatments for benign essential blepharospasm and related facial musculature disorders, while providing patient support and education.
RCSI Dublin focuses on health sciences education and research, providing training and development opportunities for healthcare professionals.
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 Hearing Industries Association advocates for hearing health care, focusing on product innovation, public policy, patient safety, and education related to hearing and balance disorders.
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