DEBRA South Africa
Epidermolysis Bullosa (EB) is an illness that causes the skin to be fragile or loose. Because the skin is so fragile, it can be easily injured, causing painful blisters to form. These blisters can cause serious problems if they become infected and this can be fatal.
EB is hereditary (runs in families).
Anyone can have EB. Generally, the symptoms first appear in babies or toddlers.
DEBRA South Africa transitioned from a small informal support group that was available for all EB sufferers, parents or caregivers of EB-affected people all over South Africa. The organisation registered as an official NPO DEBRA group during the same period as the Global Pandemic.
DEBRA South Africa applied for the GlobalSkin Member Impact Fund to be able to launch and introduce their new DEBRA group to the country and attract future membership. After months of planning & adapting to the global pandemic, the launch was hosted online.
The Member Impact Fund allowed the organisation to send Launch Goodie Packs to each member who signed up. The Launch Goodie Pack included snacks, printed information & a handmade EB butterfly brooch (as the butterfly is the emblem for EB). This gave attendees a sense of tangibility and brought the entire event together.
One of the biggest challenges of the organisation, is the ability to connect with members online as many people with EB live in remote areas and don't have access to the internet. However, the 80-minute launch yielded a great turnout. After the launch program had finished, many members even stayed online to connect with one another.
"Thank you DEBRA SA for an amazing launch and bringing together more EB patients to the South African EB community! Let’s make history together." Dané Rossouw
"Thank you to the DEBRA South Africa team for everything you are doing and have done to make this happen. Connecting with everyone today was great. Wonderful to meet all these amazing families." - Sandra Ball
"Thank you DEBRA SA for a wonderful launch." - Elisabeth Booth
Learn more about DEBRA South Africa by visiting http://www.debra.org.za/
And follow them on Facebook: https://www.facebook.com/groups/DebraSouthAfrica/
