Posted on 15/03/2012
Organiser Dr Rafael Yanez, Patron Helene Raynsford and Professor George Dickson
Royal Holloway, University of London hosted a Rare Disease Day event yesterday (29 February) to 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.
Building on the success of last year's event, the College organised a day of exhibitions, hands-on activities and lectures involving staff, students, charities, local schools and the general public. Fifteen patient associations shared the exhibition floor in the College’s Picture Gallery with postgraduate- and undergraduate-led activities. Visitors had the opportunity to explore labs and participate in online research of rare diseases.
The day ended with a series of talks by leading scientists, patient representatives and a highly inspirational lecture by Patron Helene Raynsford. Helene, who suffers from rare disease Ehlers-Danlos Syndrome, made history by becoming the first woman to win a Paralympic gold in the arms-only single sculls for Great Britain. She completed a Biochemistry degree at Royal Holloway in 2003 and is currently studying an MSC in Human Neuroscience.
Helene spoke about the challenges she faced and the way she had to adapt her training because of her condition.
Speaking after the event she said: “I was delighted to be involved in the day and I hope it goes some way in raising the profile of those lesser known conditions. I hope my talk helped to illustrate that whilst having a rare disease can have limitations it does not mean you have to give up on your dreams and with the right support anything is possible.”
Event organiser Dr Rafael Yáñez from the School of Biological Sciences said: “Royal Holloway’s commitment to rare disease research and teaching has been very successfully showcased at this event. I would particularly like to praise College research staff and postgraduate and undergraduate students for making the day such a success. Visitor and exhibitor feedback has acknowledged the quality of the event and its importance to rare disease awareness.”
Royal Holloway is a leading institution in the development of novel therapies for rare diseases, including Spinal Muscular Atrophy, Duchenne Muscular Dystrophy, and Severe Combined Immunodeficiency.
To view a selection of pictures from the day please click here