Supporting families affected by Rett syndrome in South Africa

Rett syndrome is a neuro-developmental disorder that affects approximately 1 in every 10 to 25 thousand girls. It can affect boys but this is extremely rare.

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Awareness & Education

Empowering communities with knowledge to identify and support Rett syndrome.

Early Intervention

Facilitating timely diagnosis and care for improved quality of life.

Family Support

Building a compassionate network to share experiences and resources.

Research & Advocacy

Driving innovation and policy change for a brighter future.

Welcome

Our Journey

Cure Rett SA was founded in 2012, in Cape Town South Africa by Estelle Nabal (mother of Abigail). She ran the organisation with a group of like-minded parents with a passion for raising awareness about Rett syndrome. Estelle has since immigrated and the organisation was rebranded to Rett SA by Kerry Craukamp (mother of Abigail) and Dionne Snyders (mother of Hannah).

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Empowering Awareness, Diagnosis, and Community Support

Our Mission

Due to the rare nature of Rett syndrome, it is often misdiagnosed or undiagnosed.

One of our priorities is to ensure that medical professionals in South Africa are better informed regarding the symptoms, progression and management of Rett syndrome. Our aim is to enable early diagnosis to facilitate early intervention for families impacted by Rett syndrome.

To create a support system for families affected by Rett syndrome. Rett SA provides various opportunities to share information amongst the Rett community, to support the children and each other. We strive to improve the lives of people living with Rett syndrome and their families. In order to achieve this, funding is required to drive the organisation toward its stated vision.

Together we are stronger. Every child with Rett syndrome deserves the opportunity to reach their fullest potential. Help us to give our Rett Angels a voice!

How to Get Involved

Join the Rett Registry

Help us build a stronger community by joining the Rett Registry. If your family has received a Rett syndrome diagnosis, click below to provide your details.

By registering, you enable us to connect with you, understand your needs, and offer tailored support. Together, we can enhance resources and advocacy for all families affected by Rett syndrome.

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TESTIMONIALS

pRETTy Cool Stories

I thank God every day since the day I found Rett SA. It was an amazing journey we went through together. I've learnt everything here, I grow courage to talk about Rett awareness, and to explain to people about it . I’ve become stronger, great experience it was. There was a time when I couldn’t afford nappies and food. I would cry and say Lufuno was born to the wrong family, because I couldn't provide for her. I would like to thank my Rett SA Family for their support and everything. I'm grateful!
Zanele
Mother of Lufuno
Let me take this opportunity to appreciate Rett SA family. My journey since I joined has been a blessing for me and Tintswalo (my 6 year old). I’ve gained more knowledge about the syndrome through this group, and the support that we get from the Rett clinics will always be my biggest flex. Because for us, it meant no more disturbing her routine by waking up in the wee hours and go que the whole day where we use to attend our therapy program. Because she would be asleep and tired most of the time, which means she won't be assessed thoroughly.”
Charity
Mother of Tintswalo
I thank God for Rett SA. This initiative came in handy for my daughter. Since we joined the group, we learned a lot from the information shared in the group. Rett clinics assisted us when it comes to training her, the diet needed, and the overall assessment they performed. We are grateful for the grocery vouchers we get in December because it balances other needs we have. I'm at ease that there are kids like her out there, and she's not the only one. May God extend your initiative!
Tertia
Mother to Bontle
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Explore Our Events

Discover the heart of Rett SA through our Events Hub. Browse our Events Gallery to relive meaningful moments from past gatherings, and check out our Events Calendar to stay informed about upcoming activities.

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Stay Informed

Join our community and be the first to know about the latest updates, events, and stories from Rett SA. By subscribing to our newsletter, you'll receive valuable insights, inspiring success stories, and information on how you can get involved in supporting families affected by Rett syndrome.

Help us raise funds for life-changing support, research, and awareness initiatives.

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Volunteer, fundraise, or partner with us to make a difference for children and families affected by Rett syndrome.

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