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This Foundation was formed due to the ongoing and dire need for increasing the awareness of Porphyria within South Africa and globally.  Listed as a "rare disease", however in South Africa where 3 in 1000 are said to be affected by Variegate Porphyria, this begs the question as to why in this day and age there is still so little known about this condition both within the communities and within many diverse medical fields.
We can only surmise that possibly within the medical fields not many patients with Poprhyria are seen. The reasons for this could be twofold; families are not aware of the possible genetic inheritance and patients who are diagnosed are not obtaining the necessary support from within the system and thus attempt to manage their condition on their own with little or no medical intervention.

Whatever the reasons, there is a desperate need to provide unbiased information based on patient experiences, to offer support for both the patients and their families, many of whom who often find themselves isolated and unable to cope with the demands of the condition. Lack of understanding the intricacies of the condition often mean that patients are misunderstood, assumed to be difficult, labelled as hypochondriacs, or lazy.

We want to end the stigma, by bringing this out in the open, encouraging family and friends to provide support and motivation to those afflicted with this disease. Much of the material content of this site has been provided by a patient and one of the Founders of The South African Porphyria Foundation, who has conducted years of research into the disease, the chronic symptoms, triggers and ways of managing this.

The South African Porphyria Foundation has been started with no financial aid or backing from any source other than the input by the founders who have volunteered to bring this to fruition.


This website has been created for patients by patients, the more active members we have, the better our chances of getting this disease the attention that it so rightfully deserves. All we ask is for your support behind this initiative, spread the word, put people in contact with our website, patients, family and friends sign up to the membership and lets get noticed!

Special thanks to those who have contributed over the years towards getting us to this point.

Please read the Full Disclaimer Notice's below!

The South African Porphyria Foundation 

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