“It is really hard, but I take strength from working with a team”
Miriam is one of our greatest treasures. She is a specialist nurse and is a key member of our team. With news of the lockdown and the rising number of people affected by COVID-19, Miriam joined the group of front line health care professionals fighting against the virus. We are very much looking forward to […]
Counselling and its role in the treatment of Epidermolysis bullosa
Counselling plays a very important role in the treatment of patients with EB. The condition is in many cases degenerative, leading not only to physical disability, but also to social isolation. Patients and their families often need to contend with the distress of having to accept the diagnosis of a disease that has no cure […]
I have learnt to accept the condition as a part of me without letting it control my life
Lena is Austrian; she is 25 years old and has EB. For the last year Lena has been working at the charity helping with our fundraising campaigns, inspiring so many of us and teaching us a valuable lesson in life. What is life living with EB for you? To be honest living with EB is […]