Prader-Willi Syndrome Support Group SA

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. 

We are a support group under the umbrella of Rare Diseases South Africa.  Three main areas of focus are support, education and advocacy. The main purpose has been to share, communicate and support parents through the challenges of raising a child with this condition. We share latest guidelines for raising children with PWS and research that is being done into supporting people with PWS worldwide. Support is offered to parents via social media, a website, whatsapp groups, email, networking and training. 

We advocate for better health care for people with PWS and parents work together to raise awareness of PWS in South Africa.  May is the global PWS Awareness month, with awareness day on the last Friday in May. We take part in the global “Go Orange” Campaign to wear orange and share pictures on social media to rai...