Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview. Reference: Access aggregated data from Orphanet at Orphadata. Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version April 2026
Newly diagnosed with
Prader-Willi syndrome due to paternal deletion of 15q11q13 type 1?
Our RARE Concierge Services Guides are available to assist you by providing information, resources and connections as you navigate your rare disease journey.
Advocacy Organizations
Indian Prader Willi Syndrome Association India
Awareness, support, patient Advocacy, genetic testing, d
International Prader-Willi Syndrome Organisation
IPWSO's mission is to unite the global PWS community to collectively find solutions to the challenges of the syndrome and to support and advocate for people with PWS and their families, PWS associations, and professionals who work with people with PWS.
PPP2CA Pathways
PPP2CA Pathways connects families, shares strength, and supports the research community in the search for answers to Houge-Janssens Syndrome type 3.
Prader-Willi Syndrome Association USA
To enhance the quality of life of and empower those affected by Prader-Willi syndrome.
Rare Chromosome Disorder Support Group – Unique
Through sharing knowledge and lived experience, Unique helps families and professionals navigate the world of chromosome and gene disorders
reed’s
Reed's Reach for 15q13.3 is dedicated to accelerating the development of diagnostics, treatments, and curative therapies for 15q13.3 microdeletion syndrome and its associated neurodevelopmental and psychiatric disorders, including autism spectrum disorder, schizophrenia, and epilepsy. We achieve this by supporting and funding scientific and clinical research to develop translational therapies.
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Clinical Trials
For a list of clinical trials in this disease area, please click here.