Global PWS Registry Debuts as Part of Prader-Willi Syndrome Awareness Month
Washington, D.C. and Pasadena, Calif.—May 4, 2015—The Foundation for Prader-Willi Research (FPWR) and National Organization for Rare Disorders (NORD)® today launched the Global Prader-Willi Syndrome Registry, a new database to accelerate research and cures for the rare disease Prader-Willi Syndrome.
The Global PWS Registry creates a platform for patients around the world to share information about PWS with researchers on developmental history, medical complications, and quality of life.
NORD President and CEO Peter L. Saltonstall said the Global PWS Registry addresses what is widely recognized as one of the greatest needs and inherent challenges of the rare disease community – natural history data to help medical researchers better understand how diseases develop and progress over time.
“The Global PWS Registry will provide a complete picture of each patient’s experience with Prader-Willi,” said Foundation for Prader-Willi Research Executive Director Susan Hedstrom. “We are launching this initiative to help fill the missing link researchers and medical experts need to advance research and get to a cure.”
To help drive awareness and participation, FPWR has created a custom Facebook Profile Pic creator that will allow participants to promote the registry: http://www.fpwr.org/pic-creator. This is one of many activities planned for Prader-Willi Awareness Month.
“Our goal is to enroll as many patients, or their parents or legal guardians, as possible,” said Hedstrom. “The success of the registry is dependent upon community participation.” read more >
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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