Welcome to Rett South Africa

Supporting families. Raising awareness. Giving our Rett Angels a voice.

Rett SA is dedicated to improving the lives of people living with Rett syndrome and their families. We work to raise awareness, promote earlier diagnosis, improve understanding among medical professionals, and create a supportive community where families can share information, experiences and hope.

Through education, advocacy, support initiatives and access to resources, we strive to ensure that every child with Rett syndrome has the opportunity to reach their fullest potential. Together, we are building a stronger Rett community and helping give our Rett Angels a voice.

Understanding Rett Syndrome

Knowledge creates understanding, and understanding creates better support.

Rett syndrome is a rare neurological disorder that primarily affects girls and can have a profound impact on communication, movement and everyday life. Because it is rare, it can often be misunderstood, misdiagnosed or diagnosed later than it should be.

At Rett SA, we believe that greater awareness and education can make a meaningful difference. By helping families, healthcare professionals and communities better understand Rett syndrome, we can encourage earlier diagnosis, appropriate intervention and compassionate, person-centred care.

Together, We Can Make a Difference

Building awareness, creating connection and giving families hope

Rett SA is committed to creating a stronger future for everyone affected by Rett syndrome. Through awareness, education, advocacy and community support, we work to ensure that families have access to the knowledge, resources and connections they need throughout their Rett journey.

But we cannot do this alone. Every conversation that raises awareness, every family we connect with and every person who chooses to support our work helps us move closer to a future where Rett syndrome is better understood and every individual has the opportunity to reach their fullest potential.

A Community That Understands

Connecting families, sharing knowledge and creating hope

Living with Rett syndrome can bring challenges that are difficult to navigate alone. Rett SA brings families together with a community that understands their experiences, providing opportunities to connect, share knowledge and find encouragement from others who are walking a similar journey.

Through awareness, education, support and advocacy, we are working to create a future where Rett syndrome is better understood and families feel empowered every step of the way. Together, we can make sure that every individual living with Rett is recognised for who they are, their abilities are celebrated, and their voice is valued.

Every Voice Matters

Creating a future where every Rett Angel is heard

At Rett SA, we believe every person living with Rett syndrome has a voice, a story and a future worth supporting. Through awareness, education, advocacy and community, we are working to ensure that every Rett Angel is understood, valued and given the opportunity to reach their fullest potential.


 

Stand With Rett SA

Your support can help create a brighter future

Every contribution helps Rett SA continue raising awareness, supporting families, connecting the Rett community and improving understanding of this rare condition. Whether you donate, volunteer, share our message or simply help spread awareness, you can play a part in giving our Rett Angels a stronger voice and helping families feel less alone.

Testimonials

Charity, mother of Tintswalo
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
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
Zanele, mother of Lufuno
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!
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!
Tertia, mother to Bontle
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!
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!