The CFSA is registered with the Department of Social Development S. A as a Non profit All Volunteer Organization (NPO 084-336) and is managed by a Board and guided by Professional Advisors.
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:
- Raise awareness
“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”
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.
Co-Founder and Chairperson
Co-Founder and Treasurer
Judy Kerrich Walker