Posted on 13/02/2014
Henry George, a student from the Department of History at Royal Holloway, University of London, met Her Royal Highness The Countess of Wessex as part of her work with rare disease charity DEBRA.
Henry, who has suffered from Epidermolysis Bullosa (EB), a group of incurable genetic skin conditions which cause the skin to blister and tear at the slightest touch, since he was just a few days old, presented flowers to The Countess during her visit to St. Thomas’ Hospital on Wednesday (12th February). The visit comes less than three weeks before Rare Disease Day, an international day championed by Royal Holloway.
Rare Disease Day, held on February 28th, has been marked at Royal Holloway for the last three years, to help highlight the need for more research and funding to help sufferers and their families and to draw attention to the millions of people who are affected by them. This year the event, which is part of the University’s week-long Science Festival, will include a series of talks, including one from DEBRA, the national charity that supports individuals and families affected by EB and of which The Countess is a patron.
Henry said: “I’m really pleased that Royal Holloway is supporting DEBRA through Rare Disease Day to raise awareness of Epidermolysis Bullosa. It feels good to be at a university that helped me to settle into student life, and that they are working with a charity that will help others to do the same.”
Event organiser Dr Rafael Yáñez, from the School of Biological Sciences, commented: “It is important for us to continue to highlight and continue our ongoing campaign for more research and funding in order to find cures for these crippling diseases. Rare diseases are a serious public health concern, but unfortunately often little known to health professionals and the public alike.”
Royal Holloway scientists are pioneering researchers in a number of devastating, inherited diseases including Spinal muscular atrophy and Duchenne muscular dystrophy.
Around 1 in 17 people will be affected by a rare disease at some point in their lives. Professor George Dickson, also from the School of Biological Sciences, said: “These diseases are often chronic and life-threatening, so while we may call them rare, this doesn’t mean that they can be ignored or looked over. They represent a major healthcare challenge for medical research, for clinical practice and for society in general.”