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Search 1,288 verified patient advocacy organizations — the community, research advocates, and family-support groups working on rare diseases.
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RDCP:PAG0000228
Creating a community for those affected by 17q12 syndromes while raising awareness and encouraging research.
1p36 Deletion Support & Awareness provides support, awareness, and education for individuals affected by 1p36 deletion syndrome, aiming to improve their lives and reach more families in need.
RDCP:PAG0000297
The 22q11.2 Clinic provides expert medical care for children with 22q11.2 deletion syndrome and duplication, focusing on a comprehensive team approach to care.
RDCP:PAG0000288
A supranational European network of 14 national organizations aiming to bring awareness to the 22q11 deletion syndrome and support affected individuals and families.
RDCP:PAG0000286
22q11 Ireland provides lifelong support for those impacted by 22q11 Deletion Syndrome, focusing on patient support and community engagement.
RDCP:PAG0000287
The 22q Center at Nationwide Children's Hospital offers support and treatment for children affected by 22q Deletion Syndrome.
The 22q Family Foundation supports individuals and families affected by 22q differences by providing resources, educational programs, and scholarships to help them navigate challenges and achieve their goals.
RDCP:PAG0000296
Supports patients and families affected by 22q11.2 Deletion Syndrome.
RDCP:PAG0000001
To support families affected by 3q29 deletion and duplication syndromes through advocacy, research, and community building.
The 4p- Support Group is a non-profit organization that provides support, information, and education to families and individuals affected by 4p- and Wolf-Hirschhorn Syndrome.
The 5P- Society is a support organization for individuals with 5p- Syndrome (Cri du Chat Syndrome), providing awareness, education, and support for families, educators, and medical professionals.
The AADC Family Network supports families affected by Aromatic L-Amino Acid Decarboxylase Deficiency (AADC) by providing resources, funding, and raising awareness for the disease.
RDCP:PAG0000249
To spread awareness of abetalipoproteinemia and related disorders, encourage research, find treatments, and advocate for patient needs.
The Academy of Nutrition and Dietetics provides information on nutrition and health, focusing on meal planning and choices to help prevent or manage health conditions.
Accord Alliance promotes comprehensive care for individuals and families affected by differences of sex development (DSD), facilitating collaboration among patients, healthcare providers, and researchers to improve health outcomes.
RDCP:PAG0000250
To motivate patients, friends, family and the medical community to join in advocacy and raising of awareness in hopes of finding the causation and cure of Achalasia.
RDCP:PAG0000002
To fund research and promote public awareness of Pompe disease (Acid Maltase Deficiency).
The Acoustic Neuroma Association provides information and support for individuals affected by acoustic neuroma (vestibular schwannoma), including resources for newly diagnosed patients and healthcare providers.
The Acoustic Neuroma Association of Canada provides support and resources for individuals affected by acoustic neuroma, including information on diagnosis, treatment, and community events.
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