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Ontario Prader-Willi Syndrome Association
The mission of OPWSA is to enhance the quality of life for individuals with Prader Willi Syndrome. Membership includes individuals with PWS, their families and interested professionals
Highlights: publications (especially the Red, Yellow Green System for Weight Management), local events, health news, and real life stories.
Foundation for Prader-Willi Research Canada
The mission of FPWR is to eliminate the challenges of Prader-Willi Syndrome through the advancement of research. Closely associated with FPWR in the US, the FPWR holds conferencees, as well as raising funds for research projects.
Prader-Willi Syndrome Association – USA
An organization of families and professionals working together to fund and promote research, provide education and offer support to enhance the quality of life of those impacted by Prader Willi syndrome.
Highlights: pages for providers, educators, publications and links.
Prader-Willi Syndrome Association - Arizona Association
This state association has a very informative and upbeat website on all aspects of PWS. It emphasizes practical strategies and success stories.
Highlights: current articles and issues; menus & recipes; personal stories with pictures.
The Prader Willi Syndrome Association (UK)
The only organization in the UK dedicated to supporting people with PWS, their families, carers and the professionals who work with them.
Highlights: pages for professionals, with registration which allows access to specialized resources and case studies; discussion forums; newly revised book, “Beyond the Veneer: A Guide to the Essential Features of Residential Care and Supported Living for Adults with PWS
International Prader Willi Syndrome Organization
An international organization composed of national PWS associations, represented by two delegates – one parent and one medical professional. The goal is to enhancing the quality of life for individuals and their families.
Highlights: Management of PWS (A Team Approach); publications
Canadian Pediatric Society – PWS
Canadian Paediatric Surveillance Program: Glenn Berall, principal investigator. Results from 2004 investigation into incidence of PWS diagnosis in Canada
Prader Willi Syndrome Association – USA (see description, above)
Highlights: medical alerts
Prader-Willi Alliance of New York, Inc. The Research section of this website includes a very up-to-date list of publications about medical research on Prader-Willi Syndrome and related conditions.
International Prader Willi Syndrome Organization (see description, above)
Highlights: News: Medical Reports
The Children’s Institute
PWS/Behavioural Disorders Program: Providing integrated medical and behavioural crisis intervention to persons with PWS. This inpatient hospital program for children and adults is the only one of its kind in the US (located in Pittsburg, PA).
Highlights: concise description of the characteristics of PWS and the inpatient services provided
See also:
National Organization for Rare Disorders (Prader-Willi Syndrome)
Child Development Resource Connection Peel
Focused primarily on children in their formative years, CDRCP supports families, staff and the community by sharing information, promoting education and providing opportunities to work together.
Highlights: The Special Needs section, with resources and links related to special needs funding, parent resources, training calendar and more.
Ontario Association of Children’s Rehabilitation Services
OACRS is the professional organization for Ontario’s 20 children’s treatment centers. Useful Links provides a range of specialized information.
Highlights: Transition to school; transition to adulthood