Supporting scientific research into epidermolysis bullosa

Since 2010, the Urgo Corporate Foundation has invested €75,000 in a research programme devoted to epidermolysis bullosa as part of its long-term commitment to tackling this rare and still little understood disease. The spotlight is on advances made and initiatives underway.

Epidermolysis bullosa (known as EB) is a rare, genetic skin disease. This very painful condition is characterised by skin that is extremely fragile and sensitive; it blisters and peels easily. Even friction of the skin against clothing can be intolerable to sufferers. There is currently no cure for EB and our understanding of it remains limited. It is, therefore, essential that we support research in order to improve knowledge of the disease.

Every year, DEBRA France (the Dystrophic Epidermolysis Bullosa Research Association) works tirelessly to raise funds, which are then passed on to two research platforms at the Necker Hospital (Paris) and Archet Hospital (Nice), led by Professors Alain Hovnanian and Jean-Philippe Lacour, respectively. 

It is via this association that the Urgo Foundation is financing two flagship research projects:

The creation of a database concerning patients with severe forms of EB and who are prone to developing skin cancer. Ultimately, this register will make it possible to identify the profiles of patients who are most at risk of cancer, with a view to implementing the most appropriate screening programmes.

Scientific research support and the launch of the world’s first gene therapy trials at the Necker site.

A total of €75,000 has been invested over three years to support research teams in their work to tackle EB and explore new treatment avenues that could provide hope for sufferers.Read the report by Prof. Hovnanian, of the Department of Dermatology and Genetics at Necker Hospital and INSERM U781 here.

Please be aware that some people may find some of the photos in the report disturbing. You will also find here the report concerning the work of the reference centre in the field of hereditary epidermolysis bullosa from the Nice University Hospital and INSERM unit 634.

And to find out more about advances in EB research, don't hesitate to consult the interview with Guy Verdot, Vice-president of the EBAE (the French EB support association) as well as the one with Prof. Hovnanian, in our "expert review" section.