Prader-Willi syndrome due to paternal deletion of 15q11q13 type 2
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Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http: //www.orphadata.org. Data version September 2023.
Newly diagnosed with
Prader-Willi syndrome due to paternal deletion of 15q11q13 type 2?
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
Prader-Willi Syndrome Association USA
Email: [email protected] Prader-Willi Syndrome Association (USA) is an organization of families and professionals working together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome. Medical Counselors connect doctors to patients and provide travel money to families. This organization has a parent mentoring program, local chapters in states, and offers many services to families.
Prader-Willi Syndrome Association USA
To enhance the quality of life of and empower those affected by Prader-Willi syndrome.
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.
DDX3X Foundation
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.
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.
Moonshots for Unicorns
Curing single-gene disorders
COMBINEDBrain Inc
COMBINEDBrain is a consortium for outcome measures and biomarkers for neurodevelopmental disorders. We are collaborating to cure rare, non-verbal brain disorders.
Syndromes Without A Name (SWAN) Australia
Provide information, support and advocacy to families caring for a child with an undiagnosed or rare genetic condition.
Clinical Trials
For a list of clinical trials in this disease area, please click here.