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.

Even if you do not wish to make contact with other parents it would still be great if you could let us know from a purely numbers point of view as it is the only way that we can add up how many people in South Africa have PWS.  .

You can have as little or as much contact with us as you choose and there is no charge for joining the PWS Support Group of SA.

There are several different ways that we communicate and support our community. 

• Firstly via email.  Parents are welcome to contact us with any questions they have about PWS and we will do our best to source the information to answer their questions as we have a large database of material relating to PWS and the different aspects of managing the condition.  Emails are sent out to the group about twice a year with significant announcements.

• Secondly parents can join our WhatsApp chat group to share and learn with other parents on day to day living with PWS.  It is our main form of direct communication to parents as most parents are on the group.. We are a very friendly and supportive group. If you would like to join one of these small discussion groups, please fill in the form on the contact page of this website. In the “message section” please request to be added to a group, giving us the area you live in and your cell phone number.

• Thirdly via Facebook and Instagram. Facebook is updated often with everything to do with PWS.  The latest global information, research and news is shared on Facebook as well as local news and issues relevant to PWS in South Africa.  We also share personal stories from parents in South Africa on the page. This is the best place to keep up with what is going on in the global and South African PWS community. Please “Like” our pages. https://www.facebook.com/pwsasa/ and   https://www.instagram.com/praderwillisyndrome_supportsa/ and   https://www.linkedin.com/company/prader-willi-syndrome-support-sa/ 

• If you would like to meet up we have designated regional contact people with whom you can connect. To contact us, send us a message via our contact page

PWS Support Group SA is part of a broader umbrella organisation Rare Diseases South Africa (RDSA) https://www.rarediseases.co.za/.  All families affected by Prader-Willi syndrome are encouraged to register with Rare Diseases SA due to the substantial benefits for all families affected by PWS. RDSA advocates for better health care for all rare diseases and rare conditions in South Africa.  By coming together under one umbrella it gives us a lot more strength in advocating for people with rare conditions in South Africa.  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/. We work closely together with them by attending their regular leadership Echo sessions to learn from experts in the various aspects of PWS and by sharing and learning about the running of a support group from other PWS Associations worldwide.

Donations to support us to support families and spread awareness 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.