Help Us Grow
Cystinosis is a Non Profit All Volunteer Organisation that is registered with the Department of Social Services of South Africa. The Cystinosis Support Group South Africa (now called the Cystinosis Foundation South Africa), was established in 2010 by Colin and Gail Daniels.
What We Do
To provide emotional and informative support to newly diagnosed patients and their families and introduce them to our community.
To provide a forum and social network for patients and their families to share personal experiences and provide sympathetic understanding.
To ensure that the medical needs of cystinotics are timeously and effectively addressed through lobbying and advocacy amongst health professionals.
Educate our families, as well as the communities where they live, with regards to Cystinosis. To participate in conferences in order to stay up to date with information and research related to Cystinosis.
Cystinosis is an ultra-rare disease and very difficult to diagnose. It is therefore our priority to raise awareness amongst medical professionals through information distribution, campaigning and presentations.
Donate and help make a families journey with Cystinosis easier!