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Rare Disease Day 2012

Together we are strong

Royal Holloway, University of London, hosted a Rare Disease Day 2012 event on 29 February 2012 - a rare day itself as it was a leap year.

In Europe, a rare disease is defined as one with an incidence of less than 1 in 2,000 people. While each of them is rare, there are more than 7,000 rare diseases, which together affect 24 million (six per cent) people in Europe and take 20 per cent of all health care costs. 

HeleneRaynsfordRoyal Holloway, University of London was delighted to reveal Paralympic champion and Royal Holloway alumna Helene Raynsford as the patron for the College’s Rare Disease Day.

Helene, who suffers from rare disease Ehlers-Danlos Syndrome, made history by becoming the first woman to win an Olympic 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 delivered a keynote speech on the day. She said: “I am delighted to be involved in the day and I hope it goes some way in raising the profile of those lesser known conditions which are often read about in text books but then rarely seen in practice".

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 (child in a bubble disease).

Rare diseases are a serious public health concern and an international priority, but unfortunately often little known to health professionals and the public alike.


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Meet our organisers

The organisers of Rare Disease Day 2012 were:

Dr. Rafael J. Yáñez (Lead organiser), Senior Lecturer in Genetics, Director of Planning and Resources, School of Biological Sciences and Professor J George Dickson (Co-Organiser), Chair of Molecular Cell Biology, School of Biological Sciences.


Contact us

For media related enquiries (including enquiries from organisations looking to get involved with and support our event) please email rdd@royalholloway.ac.uk


Re-watch the event

Watch the full live stream of Rare Disease Day 2012. Click here.

RDD2012 Sponsors


For Gene Therapy and Viral Manufacture:



And with thanks to Royal Holloway’s Annual Fund


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