Prader-Willi syndrome due to paternal 15q11q13 deletion
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Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version December 2023
Newly diagnosed with
Prader-Willi syndrome due to paternal 15q11q13 deletion?
Our RARE Concierge Services Guides are available to assist you by providing information, resources and connections as you navigate your rare disease journey.
COMBINEDBrain is a consortium for outcome measures and biomarkers for neurodevelopmental disorders. We are collaborating to cure rare, non-verbal brain disorders.
Our mission is to connect families, resources, and the medical community to advance research for a treatment or cure to DDX3X Syndrome. Our ultimate goal is to accelerate brain function in individuals affected by DDX3X Syndrome through advances in cell and gene therapy and pharmaceuticals.
Indian Prader Willi Syndrome Association India
Improve the quality of life for all Indian people with Prader-Willi Syndrome and their families. Improves the physical and mental well being, socially as well as occupationally, of all people with Prader Willi syndrome
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.
Moonshots for Unicorns
Curing single-gene disorders
Prader-Willi Syndrome Association USA
To enhance the quality of life of and empower those affected by Prader-Willi syndrome.
To fund research for treatment and/or a cure for CASK Gene Disorder
Rare Chromosome Disorder Support Group – Unique
To inform, support and alleviate the isolation of anyone affected by a rare chromosome or single gene disorder and to raise public awareness.
Syndromes Without A Name (SWAN) Australia
Provide information, support and advocacy to families caring for a child with an undiagnosed or rare genetic condition.
For a list of clinical trials in this disease area, please click here.