– Cure EB –
Damian, Patron of the Cure EB charitable organization, attended the annual ‘Research the Cure’ update event at The Royal Institution of Great Britain on Tuesday, March 25, 2025.
There were a group of fantastic speakers and panelists including, Professor John McGrath, Professor Jemima Mellerio, Dr. Ciro Chiappini, Dr. Joanna Jackow-Malinowska, Dr. Emanuel Rognoni, Dr. Anna Martinez and Dr. Matthias Titeux.
Cure EB (formerly Sohana Research Fund) was founded by Sharmila Nikapota (Collins) and is dedicated to finding effective treatments and a cure for Epidermolysis Bullosa.
Epidermolysis Bullosa (EB) is a group of inherited conditions where the skin, or mucous membranes (the lining of the mouth, gut, or eyes, for example), blister with only mild trauma, friction or even spontaneously.
It is not gender or ethnicity specific. The genetic errors in EB result in defects in the skin proteins, because one or more of the proteins that stick the outer and deeper layers of skin together are either faulty or missing.
Over the past 15-20 years, 20 known causative genes have been found with thousands of mutations. Additional modifier genes affect severity and symptoms.
EB is not a single condition: the various types are divided into four main groups according to the depth below the skin surface at which the blisters occur: EB Simplex, Junctional EB, Dystrophic EB, and Kindler Syndrome.
For more information, please visit Cure EB.
