Prader-Willi Syndrome Support - South Africa

12/10/2026

Please join the registry and complete surveys like these, they would like more participants from counties other than the USA to get a better global picture

Explore the latest Global PWS Registry data on growth hormone therapy, including treatment rates and age at treatment initiation across the PWS community.

24/09/2026

🌍 Join IPWSO for our next Family Meeting!

Meaningful occupation and activity for adults with PWS: Promoting well-being and community

📅 Wednesday 7 October 2026
🕑 2pm UK time
💻 Online via Zoom

What can a meaningful and fulfilling day look like for an adult with PWS?

Join us as we explore different approaches to meaningful activities, from employment and volunteering to day programmes, recreation and community activities.

We’ll hear from:

🎤 Fred Nicolai, Chairperson of the Dutch Prader-Willi Foundation and founder of Prader-Willi Huis.

🎤 Janice Agarwal, parent and founder of Watch Us Farm, an inclusive community providing employment and learning opportunities for people with disabilities.

🎤 Maria Benedekova, parent from Slovakia, sharing her family’s experience of supporting her son Tomáš, 24.

There will also be time for questions, discussion and sharing experiences.

🌎 Spanish and Portuguese simultaneous translation will be available.

The meeting is aimed at parents and families, but anyone with an interest in PWS is welcome.

🔗 Find the Zoom link and meeting details in the comments.

RareDisease PWSCommunity

24/09/2026

Join us for this insightful and interactive event, about meaningful daytime activities for adults with PWS

🌍 Join our next Family Meeting!

Meaningful occupation and activity for adults with PWS: Promoting well-being and community

📅 Wednesday 7 October 2026
🕑 2pm UK time
💻 Online via Zoom

What can a meaningful and fulfilling day look like for an adult with PWS?

Join us as we explore different approaches to meaningful activities, from employment and volunteering to day programmes, recreation and community activities.

We’ll hear from:

🎤 Fred Nicolai, Chairperson of the Dutch Prader-Willi Foundation and founder of Prader-Willi Huis.

🎤 Janice Agarwal, parent and founder of Watch Us Farm, an inclusive community providing employment and learning opportunities for people with disabilities.

🎤 Maria Benedekova, parent from Slovakia, sharing her family’s experience of supporting her son Tomáš, 24.

There will also be time for questions, discussion and sharing experiences.

🌎 Spanish and Portuguese simultaneous translation will be available.

The meeting is aimed at parents and families, but anyone with an interest in PWS is welcome.

🔗 Find the Zoom link and meeting details in the comments.

23/09/2026

Our community is growing, we have over 1400 followers of our page. Welcome!

If you are a family living in South AFrica with a baby or child diagnosed with PWS please make contact with us.

We have guidance info and you can find out more about connecting with other families. We also have whatsapp groups for parents and adults with PWS. In addition it is helpful for us to try and "count" the number of people living with PWS in South AFrica.

You can email me on [email protected]

26/08/2026

Add Rare Diseases SA to your Woolies My Difference card

Big change starts with people who care. 💙

We're inviting our community to choose RDSA as their cause on the Woolworths App. Every new supporter helps us grow awareness, expand our reach, and stand a chance to secure additional funding for our work.

Together, we can create a stronger voice for everyone affected by rare diseases.

Add RDSA as your cause today and be part of the difference.✨

09/08/2026

Wishing all the wonderful women in the lives of people living with PWS the best women's day!

We are so grateful to the mom's, gran's, sisters, drs, therapists, nutritionists, teachers, carers and other women who support those with PWS in South Africa. It is a complicated medical condition with unique social, emotional and behavioural issues to understand and we appreciate all the support.

30/07/2026

The data in this registry is so important for understanding PWS. Please take part.

Did you know? Friendliness and spirituality are among the top traits reported by caregivers in the Global PWS Registry.
Help advance PWS research by joining or updating your Registry profile: https://hubs.la/Q04q6GpD0

17/07/2026

It’s been an honour to represent IPWSO at the 17th African Society of Paediatric and Adolescent Endocrinology (ASPAE) Congress in Dakar, Senegal. 🌍🇸🇳 Thanks for the opportunity.

From IPWSO: Karin Clarke, IPWSO’s Vice President, gave a presentation on PWS, sharing knowledge and raising awareness among healthcare professionals from across the region.

The congress programme also featured a PWS case study presented by Dr Joel Dipesalema from Botswana.

It has also been a great opportunity to connect with several IPWSO grant recipients from Nigeria, including Dr Theresa Nnaji, Dr Chioma Ahumaraeze, Dr Stella Oji-Onuoha and Dr Oluwadamilola Oladipo, and to hear more about their efforts to improve support for people with PWS and their families.

We are grateful to ASPAE for bringing together healthcare professionals from across Africa to learn, collaborate and improve care for rare diseases such as PWS.

23/06/2026

What an amazing achievement by
Willemien as she completed her 250th Parkrun on Saturday 27, at Riverside Parkrun, Mbombela.

She enjoyed the excitement and fuss from friends and family who are so proud of her, as are we at PWS Support SA.

She is very motivated and enjoys the outing every Saturday morning.

This is a wonderful example of how when people living with PWS get into good habits,they are motivated to keep going.

21/06/2026

I hope all the dads are being spoilt today as we celebrate their support, guidance, fun, strength, love and sacrifices for their children with PWS, siblings and wives