Prader-Willi Syndrome Support SA is an organisation of families and professionals dedicated to working together to offer support, raise awareness, provide education and advocacy for people living with Prader-Willi Syndrome in South Africa.
If a family member of yours has recently been diagnosed with PWS please reach out to us via our contact page. We have a welcome pack of positive information that will guide you along your journey. We know that the time of diagnosis is really hard and it often helps just to know there are other people out there on the same journey and that you are not alone. Although you may feel overwhelmed with this diagnosis there is a lot you can do to help your child with PWS live a happy, fulfilling and healthy life. Many parents look back upon the day their child was diagnosed and reflect that they should have worried less and enjoyed more. How they were often pleasantly surprised by their child and what he or she has been capable of.
Please contact us via our contact page, we would love to hear from you or follow us on our Social Media Pages:
- Facebook @pwsasa https://www.facebook.com/pwsasa/
- Rare Diseases South Africa (RDSA) https://www.rarediseases.co.za/. - PWS Support Group SA is part of the RDSA broader umbrella organisation All families affected by Prader-Willi syndrome are encouraged to register with Rare Diseases SA. Alone we are weak but together we are strong.
- PWS support Group SA is also affiliated to the International Prader-Willi Syndrome Organisation (IPWSO) https://ipwso.org/.
- Donations to support us can be made on our backabuddy page: https://www.backabuddy.co.za/champion/project/prader-willi-syndrome
Please contact us if you are looking for specific information and not finding it.
We hope that you find our website helpful.