About us

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.

Who we are

The Cystinosis Foundation South Africa, formerly known as the Cystinosis Support Group South Africa, was founded in 2010 by Colin and Gail Daniels. They have a daughter, Danielle, who has cystinosis. At the time of her diagnosis, the Daniels family felt isolated with no support, information or education of this rare disease. Our chief objectives are therefore to:

Support
Educate
Raise awareness

The CFSA is a registered with the Department of Social Development (NPO 084-336) is an all- volunteer NPO and is managed by a Board and guided by Professional Advisors

families assisted

Our Friends

fundraisers

Cups Serviced

Our Mission

“To provide emotional and informative support to all diagnosed with Cystinosis in South Africa, as well as their families, in order to create a sense of community”

our services

CFSA is the only charity in South Africa working on behalf of the cystinosis community.

Support

To provide emotional 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

Educate our families as well as the communities where they live with regards to cystinosis. To participate in conferences relevant to Cystinosis in order to stay up to date with information and research related to Cystinosis.

Raising awareness

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.