DEBRA International is delighted to welcome DEBRA South Africa as one of its newest member groups.
DEBRA South Africa started in 2020 after around 30 years of informal patient support. COVID-19 gave our little volunteer team enough free time to register and go through the motions of becoming a recognised NPO.
We work to support patients living with EB across South Africa and we do so by offering emotional support, practical information and linking patients to physicians that are familiar with EB across the country.
Our team attend conferences around the world to better our knowledge and stay on top of the latest information. We are also affiliated with GlobalSkin in Canada, which is an organisation that supports patient-led groups in the skin-based conditions and rare disease categories.
While it is extremely difficult to support patients in a developing country, with multiple languages, ethnicities and cultures - it is still so necessary. Unfortunately, due to lack of funding and awareness most of our babies born with EB don't make it past the 3-month mark, due to trial-and-error based behaviour and lack of access to the correct immediate medical care.
Over the past few years, we have collectively contributed to over five clinical practice guidelines and delivered speeches on the topics of EB, living rare and patient quality of life for both local and international platforms. As well as podcast sessions and news articles to spread awareness. We are so glad to be affiliated to DEBRA International after a good few years of working together and look forward to the collaborations and team work to come!
– Toni Roberts, Chairwoman