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Porphyria SA
- May 21, 2021
- 1 min
Exciting Announcement - The South African Porphyria Foundation is Launched
We are super excited to celebrate the launch of The South African Porphyria Foundation which is a website specifically aimed to provide...
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Porphyria SA
- Apr 5, 2022
- 2 min
Porphyria Awareness Week 2022
Porphyria Awareness Week is a global initiative aimed at educating and raising awareness about the Porphyrias. The South African...
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Porphyria SA
- Mar 20, 2022
- 2 min
This Broken Body of Mine
"The day I wrote this poem, I was filled with both anger and sadness, such was the emotions I felt that I had to put pen to paper and get...
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Porphyria SA
- Feb 4, 2022
- 4 min
My Personal Story
By Amanda Boston Unedited, this personal story depicts the trials faced by this remarkable young woman, inviting the reader to follow her...
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Porphyria SA
- Nov 5, 2021
- 3 min
Spotlight on Erythropoietic Protoporphyria or (EPP as its also known)
According to data on the UCT website, there are roughly 20 families in South Africa with EPP. EPP is caused by mutations in one or more...
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lynncroker6
- Nov 2, 2021
- 6 min
The Mental Strain of Living With Variegate Porphyria!
When I sit and think about what it means to have Variegate Porphyria a few things come to mind, the painful skin lesions and scaring, the...
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Porphyria SA
- Sep 19, 2021
- 8 min
South Africans who have a rare disease - Are they slipping through the cracks in the system?
What happens to people in South Africa who have rare diseases? Little is known about the number of people in South Africa who are living...
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Porphyria SA
- Sep 17, 2021
- 0 min