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03.03.2014

The limelight on research for Rare Disease Day

Many DEBRA organisations around the world got involved in this year's Rare Disease Day, on 28th of February. In addition to the national events, DEBRA International Research Manager, Dr. Clare Robinson took part in some activities to highlight the importance of EB research.

Clare was invited to The Royal Holloway University of London to speak about EB, to biology students and school teachers. The focus of the talk was on the hope being created by regenerative medicine research, for people with EB.

Along with other rare-disease charities, DEBRA also had a stand at the event, where DEBRA UK Research Assistant, Emma Batten, and nurse, Caroline Mackenzie, were on hand to speak to school students about EB research and nursing care for people with EB.

In another event to coincide with Rare Disease Day, Clare was invited to speak in a debate at the UK's Imperial College's Business School, on the topic of whether commissioners of healthcare (public or private) should fund regenerative-medicine therapies for rare diseases. Encouragingly, a major UK healthcare provider said that it is not the cost, nor the number of people with a condition that would affect their decision to fund a treatment, but whether the treatment made a real difference to improving the health and length of life of the treated person.

Avril Kennan, DEBRA Ireland and DEBRA International

Research assistant Emma Batten giving information at a stand (The Royal Holloway University of London), which is decorated with DEBRA UK logo and posters

Information stand at The Royal Holloway University of London