International Prader-Willi Syndrome Organisation (IPWSO) supports people with Prader-Willi Syndrome (PWS) and their families in over 100 countries and acts as an umbrella body for national PWS associations in 37 countries. IPWSO supports Health Information and Universal Health Coverage for all, including those with rare disorders such as Prader-Willi Syndrome. 1 in 15,000 – 25,000 babies are born with Prader-Willi Syndrome, which affects all races and both sexes. With appropriate information and care, people with Prader-Willi Syndrome can live long and healthy lives. Sadly, it is likely that many people with the syndrome are never diagnosed and others, although diagnosed, do not receive appropriate information or support. IPWSO is a nonprofit organisation that was established 30 years ago and provides services and supports to people with PWS and those who support them. These are described on our website: https://ipwso.org/how-we-can-help/
IPWSO is currently inviting and health and allied health professionals with an interest in learning more about Prader-Willi Syndrome to join a free online mentoring program that will begin in February 2021. You can learn more here: https://ipwso.org/how-we-can-help/project-echo/about-ipwso-health-echo/