The Global PWS Registry is managed by the Foundation for Prader-Willi Research (FPWR) www.fpwr.org with the mission to support and accelerate PWS research.
The purpose of the Global PWS Registry is to enhance the understanding of PWS by describing the full spectrum of PWS characteristics. The Registry is a comprehensive and secure database, compliant with health information privacy laws.
PWSS (SA) would like to encourage all who are involved in the life of somebody with Prader-Willi syndrome to join the database of Rare Diseases South Africa. (www.rarediseases.co.za/patients). Your information will help RDSA to get a better idea of the number of persons with Rare Diseases in South Africa. As a joint initiative, between Rare Diseases SA and the Prader-Willi Syndrome support group, we are confident that our parents and children will continue to get the very best support and care.
"JOIN THE FIRST APP OF ITS KIND!"
Join IPWSO's huge family around the world, make new friends and get the very best information for your child and your family. Prader-Willi World will give you information from diagnosis to support, from birth to old age.