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We are a small support group operating under the umbrella of the Rare Disease Association of SA allowing us the benefits of their association as well.
Information on the Prader-Willi syndrome is available in different languages on the website of IPWSO, as well as LINKS to several other international associations.
International Prader-Willi Syndrome Organisation (IPWSO)
Other international Prader-Willi Syndrome Associations
United States of America: (Information also in Spanish)
Prader-Willi Syndrome Association (USA)
Prader-Willi Syndrome Association (UK)
Foundation for Prader-Willi Research
Global Prader-Willi Syndrome Registry
The purpose of the registry is to develop a comprehensive database of individuals with PWS to better understand the full spectrum of PWS characteristics, all people with PWS or their guardians are encouraged to complete the registry.
Prader-Willi Syndrome Association of Australia
LINKS to other State PWS Associations in Australia
Facebook-based International chat group
Prader Willi Syndrome Open Forum
For useful TIPS go to:
Latham Centers - under Top Categories
The Children's Institute of Pittsburgh
Genetic Counselling services
University of the Witwatersrand, Johannesburg
Medical - Genetic Counselling Services
www.wits.ac.za/pathology/divisions/human-genetics/services/medical- -genetic- counselling-services/
The National Health Laboratory Service (NHLS) - the largest diagnostic pathology service in SA
University of Cape Town
Clinical Genetics & Genetic Counselling
South African Government Services
The South African Social Security Agency (SASSA), a Social Development entity, is responsible for the administration and management of social grants.
The Child Magazine’s website has a lovely section dedicated to “Dealing with Difference” with a great list of therapists and schools in alphabetical order.
Genetic Alliance South Africa
Western Cape Forum for Intellectual Disability
Facial Morphology Research Group
The Association for Dietetics in South Africa (ADSA)
(Find a dietician in your area)
The South African Speech-Language- Hearing Association (SASLHA)
The South African Society of Physiotherapy
Occupational Therapy Association of South Africa (OTASA)
Below are web addresses and references for resources to support the adult person with PWS in your care.
http://www.ipwso.org/what-is- prader-willi- syndrome