About
This group is available for all EB sufferers, parents, or caregivers of EB affected people all over South Africa. It's a safe place where advice can be asked from people dealing with this disease day in and day out.
Impact Fund Project
The GlobalSkin Member Impact Fund provided the opportunity for a representative from our organization to attend the 1st World Congress on Rare Skin Diseases. This gave DEBRA South Africa the space to be included in the latest research reporting, the networking and collaboration that this encompassed, and the chance to represent Southern Africa at a European-based event. The experience has equipped our organization with fresh medical information and inter-continental medical relationships. From a management perspective, these new learnings will filter into all areas of the organization.
The Biggest Success of the Project in Our Patient Community
As the current chair of DEBRA South Africa, I was able to attend the 1st World Congress on Rare Skin Diseases. This gave the opportunity for further education, networking, and information sharing. All of which I will bring back and use within the organization going forward.
Soaking up all the new information, and collaboration projections for the future and bringing back these new learnings for our DEBRA South Africa membership.
At the Congress' opening plenary session, Professor Jemima Mellerio spoke about how rare skin disease affects the patients entire world - emotionally, physically, financially, etc. She also mentioned that often young adults with a rare skin disease are put on the back burner, in comparison to children. I remember sitting in the auditorium with tears in my eyes thinking 'she understands me and my life, this is where I am meant to be this week'.
To learn more about this organization, please visit:
Website: http://www.debra.org.za/
