For regular updates and news please follow our Facebook page:
https://www.facebook.com/pwsasa/
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.
http://www.rarediseases.co.za/
https://www.facebook.com/rarediseasesSA/
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)
www.ipwso.org
Other international Prader-Willi Syndrome Associations
United States of America: (Information also in Spanish)
Prader-Willi Syndrome Association (USA)
www.pwsausa.org
United Kingdom:
Prader-Willi Syndrome Association (UK)
www.pwsa.co.uk
Canada:
Foundation for Prader-Willi Research
www.fpwr.org
Global Prader-Willi Syndrome Registry
https://www.pwsregistry.org/
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.
Australia:
Prader-Willi Syndrome Association of Australia
LINKS to other State PWS Associations in Australia
www.pws.org.au
Facebook-based International chat group
Prader Willi Syndrome Open Forum
https://www.facebook.com/groups/pwsopenforum/
For useful TIPS go to:
Latham Centers - under Top Categories
www.lathamcenters.org –
The Children's Institute of Pittsburgh
https://www.amazingkids.org
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
www.nhls.ac.za
University of Cape Town
Clinical Genetics & Genetic Counselling
www.humangenetics.uct.ac.za/hg/services
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.
www.sassa.gov.za
Other
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.
http://www.childmag.co.za/resources/3d
Genetic Alliance South Africa
www.geneticalliance.org.za
Western Cape Forum for Intellectual Disability
www.wcfid.co.za
Facial Morphology Research Group
www.facebook.com/FaceMorphology
The Association for Dietetics in South Africa (ADSA)
(Find a dietician in your area)
www.adsa.org.za
The South African Speech-Language- Hearing Association (SASLHA)
www.saslha.co.za
The South African Society of Physiotherapy
www.saphysio.co.za
Occupational Therapy Association of South Africa (OTASA)
www.otasa.org.za
Below are web addresses and references for resources to support the adult person with PWS in your care.
www.ipwso.org
http://www.ipwso.org/what-is- prader-willi- syndrome
http://www.ipwso.org/medical-alerts- booklet
www.pwsa.co.uk
http://www.pwsa.co.uk/assets/files/Website-Update/Employers---best-practice-guidelines---website.pdf
www.pwsausa.org
http://www.pwsausa.org/wp-content/uploads/2015/12/How-a-Person-With-PWS-Thinks-GA-543.pdf
http://www.pwsausa.org/wp-content/uploads/2016/01/BeyondTheDiet-Dietician-CR-MA-GA-01.pdf
http://www.pwsausa.org/wp-content/uploads/2016/01/Stomach-and-Intestinal-Problems-in-Persons-with-PWS-MA-60.pdf
http://pwsausa.org/wp-content/uploads/2015/10/Psychiatric-Alert-for-Psychiatrists-MA-21.pdf
http://pwcf.org/wp-content/uploads/sites/18/2015/10/Psychotropic-Medication-Tip-Sheet.pdf
http://praderwilli.com.au/social-scripts/what-are-pws-social-scripts/