Guest Post – Rare Disease Day 2012

Diana Ribero at Rare Disease Day

Diana Ribero at Rare Disease Day

By Diana Ribeiro, Regional Development Officer, Action Duchenne

Across the UK, there were events to raise awareness and the urgency of providing vital funds for rare diseases. As an alumnus of Royal Holloway, I was delighted to take part in the day’s activities on campus on Wednesday the 29th of February.

I arrived early in the morning to set-up Action Duchenne’s exhibitor stand in the illustrious Founders building. Our banner was ideally placed not only amongst some very worthy causes, but also attracting lots of interest from college, university students, professionals and local parents alike. Later in the afternoon, I gave a talk about living with Duchenne from the viewpoint of our supporters, the focal point being the trailer for John Hastie’s A Life Worth Living Film, which really struck a chord with the audience.

The Bioenterprise section, although separate from the rare disease event itself was really interactive, aimed at the final year students within the School of Biological Sciences who volunteered during the day. There were many inquisitive minds present, quizzing me about the recent advances in genetic medical research and how best to get involved in charity work.

My personal highlight was Helene Raynsford, a fellow former alumni and Paralympics Champion with a rare disease (Ehlers-Danlos Syndrome). Her story was truly inspirational; pursuing your dreams and achieving your potential, no matter what the circumstances.

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About rhulscience

The Faculty of Science at Royal Holloway, University of London
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