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Foundation for Prader-Willi Blog | Global PWS Registry (2)

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PWS Registry Data: Tube Feeding [INFOGRAPHIC]

For parents of an infant with PWS, one of the first major challenges they face is feeding difficulties and having their baby consume enough nutrition and calories. Data from the Global PWS Registry shows that more than 75% of registry participants re...
February 25, 2020 Read More

Topics: Research, Global PWS Registry

PWS Registry Data: Friendships in PWS

Most people with PWS are social and enjoy spending time with family and friends. However, making and keeping friends can be difficult for people with PWS. Because of food issues, people with PWS often need supervision and monitoring, which can make i...
March 12, 2019 Read More

Topics: Research, Global PWS Registry

PWS Registry Data: 88% Have Received Speech Therapy [INFOGRAPHIC]

Speech requires a complex combination of cognitive processing to quickly find and combine the right words, paired with the physical process of producing sounds. Since PWS impacts a variety of pathways that contribute to speech and sound development, ...
July 18, 2018 Read More

Topics: Research, Global PWS Registry

PWS Registry Data: Anxiety In PWS

Anxiousness is a common challenge for our loved ones with PWS. Within the Global PWS Registry, caregiver-reported anxiety is an issue for 61% of individuals ages 10-14, and rises to almost 75% for individuals 15 and older.
May 8, 2018 Read More

Topics: Research, Global PWS Registry

PWS Registry Data: Vomiting and Choking in PWS [INFOGRAPHIC]

The inability to vomit has previously been cited as a characteristic of Prader-Willi syndrome. While there is a reduction in vomiting as compared to neuro-typical peers, 54% of participants in the Global PWS Registry have vomited (n=304) indicating t...
February 22, 2018 Read More

Topics: Research, Global PWS Registry

PWS Registry Data: 91% Have Used Growth Hormone for PWS [INFOGRAPHIC]

The Global PWS Registry, launched in May of 2015, now has more than 1,000 registered participants diagnosed with PWS, Schaaf-Yang syndrome and USP-7 mutations. This blog shares some highlights of the data collected via the registry to date. Global PW...
November 20, 2017 Read More

Topics: Research, Global PWS Registry

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The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3).

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