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Rare we are alone, together we are strong
Tue 21 Feb 2012 09:51:44 | 0 comments
This year, Rare Disease Day will take place on 29th February 2012.
The aim of Rare Disease Day is to highlight the need for more research and funding to help sufferers and their families and to draw attention to rare diseases and the millions of people who are affected by them.
I'll be celebrating the day with an AKU Society stand at Royal Holloway University, who is hosting an Rare Disease Day event. The university is a leading institution in the development of novel therapies for rare diseases, including Spinal Muscular Atrophy, Duchenne Muscular Dystrophy, and Severe Combined Immunodeficiency.
Paralympic champion and Royal Holloway alumna Helene Raynsford is 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 will be delivering a keynote speech on the day. She says: “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.
“The day gives the opportunity to showcase the research being undertaken on rarer conditions which is often overshadowed by those conditions with more house hold names. Hopefully it will empower those with rarer conditions to become experts in managing their conditions, increase their health outcomes and enjoy a better quality of life.”
The programme of events are pitched to a non-scientific audience and includes lectures, exhibitions, hands on activities, lab visits, documentary screenings and the opportunity to find out more about the College's research and teaching in our School of Biological Sciences.
Organiser of the event, Dr Rafael Yáñez from the School of Biological Sciences, says: “Gene Therapy is now delivering on its early promise of treating rare diseases, and combined with developments in stem cells will eventually revolutionise the care of these disorders. The UK is one of the international leaders in rare disease research but has yet to commit serious support to IRDiRC. This must change if we want to retain a prominent position in the delivery of therapies for rare diseases.”
Please visit the Rare Disease Day webpage and follow on Twitter @RHULScience
For further information email RDD@rhul.ac.uk
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