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Cystinosis is a rare genetic metabolic disorder which causes an accumulation of the amino acid cystine in cells, forming crystals that can build up and damage the cells. These crystals negatively affect many systems in the body, such as the kidneys, liver, spleen, thyroid, muscles, eyes and brain.
The Cystinosis Support Group South Africa was founded in May 2010 to provide support to all diagnosed with cystinosis in South Africa, as well as their families, in order to create a sense of community. It is intended that the activities of the Support Group shall include the following:
- To provide a forum and social network for cystinotics and their families to share the personal experiences and provide sympathetic understanding.
- To provide access to counselling and other support services which can be of assistance in alleviating their difficulties and struggles where possible.
- To ensure that the medical needs of cystinotics are being timeously and effectively addressed through lobbying and advocacy among health professionals.
- To provide education and raise awareness about cystinosis through information distribution and campaigning.
- To participate in conferences relevant to cystinosis in order to stay up to date with information and research related to cystinosis.
Currently we are reaching out to 16 families and trust that through awareness and the assistance of doctors, many undiagnosed will be reached.
Operates in: All of South Africa
Established in: March 2010
Non-Profit Organisation Number: 084-338
Public Benefit Organisation Number:
Section 21 Company Number:
Contact person: Gail Daniels
Phone: 021 9871414
Fax: 021 987 1414
Physical address: 28 Bisset Street, Windsor Park, Kraaifontein, Cape Town
Postal address: P O Box 669, Cape Gate, 7562
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