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.

Research

The Symbiotic World of PWSA (USA) Research

PWSA (USA) has been supporting research since 1983. The word, “symbiotic” means “a cooperative, mutually beneficial relationship between two people or groups.” All Prader-Willi syndrome support programs have a symbiotic relationship with research. We hope someday that research will make some of our programs less needed, but meanwhile research needs our programs to identify the issues and educate the researchers on the true needs of our children and families – and you to help us raise the fund to support this needed research.

We have continuous collaboration between out Scientific Advisory Board, our Clinical Advisory Board, our Research Committee (made up primarily of professional parents), and our staff to advance research. Between research, our support programs, our collaboration throughout the world, and your financial support, the progress we have made in the quality of our children’s lives due to this symbiosis would have made Dr. Prader and Dr. Willi very proud.

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Angel Flight  has access to airline tickets for study participants.  Patients must have a financial need and be able to travel by commercial airline. Angel Flight @ NIH is sponsored by the Office of Rare Diseases Research (ORDR) and administered by Mercy Medical Airlift (MMA). MMA is a non-profit organization that has served people in situations of compelling human need through charitable air transportation since 1984. MMA uses a variety of resources including volunteer pilot organizations, frequent flyer donation programs, airline contributions, business partners, and personal giving.

 

 

 

 

 

 

 

 

 

 

 

 

Edited: 07/02/2012    
 



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