In The UK
The charity DebRA U.K. provides vital support to sufferers in the forms of Specialist Outreach Nurses that will visit a newborn baby in hospital and provide advice to staff and parents of how best to handle and care for the child, a service that is continued in the home with regular follow up visits. DebRA U.K. also has a team of Support workers that will help families face the financial burden of having an EB child, by helping provide specialist equipment that is necessary and where financial aid is unavailable from other sources.
The charity was set up on July 22, 1978. The condition and the charity are mostly unheard of due to the rareness of the disease and the fact that DebRA U.K. has no advertising budget, as the majority of funds is spent of supporting families and sufferers and on a portfolio of research projects that explore many different aspects of the condition in the hope that an effective treatment will be found to end the curse of EB. To sum up, DebRA U.K. is working for a life free of pain for all EB Sufferers.
Read more about this topic: DebRA