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Rare Disease Day at Royal Holloway

Rare Disease Day at Royal Holloway

Rare Disease Day at Royal Holloway

Rare Disease Day is an international day celebrated in over 100 countries to raise awareness amongst the general public, the clinical community, and decision-makers about rare diseases and their impact on people affected and their families. At Royal Holloway we have celebrated the day since 2011 by inviting sixth form, college and secondary school students, and members of the public to attend lectures, an exhibition and to get hands-on experience in our labs.

In Europe, a rare disease is defined as one which affects fewer than 1 in 2,000 people. Most rare diseases are genetic. While each of them is rare, there are over 9,600 rare diseases, which together affect 3.5 million people in the UK at some point in their lives, taking 20% of all health care costs. Rare diseases are a serious health concern and an international priority, but unfortunately often very little is known about them by health professionals and the public alike.

Royal Holloway scientists are at the forefront in developing innovative techniques in gene and cell therapy for several rare diseases including spinal muscular atrophy, ataxia telangiectasia, Duchenne muscular dystrophy, oculopharyngeal muscular dystrophy, facioscapulohumeral muscular dystrophy and Motor neuron disease. This research is carried out in our Centre of Gene and Cell Therapy.

Rare Disease Day 2025

Our annual Rare Disease Day event was held on 28th February 2025. The event was tailored to secondary school years 10, 11 and 12 and included live talks, live exhibition, speed-dating and hands-on activities. The event touched on medicine, genetics, genomics, biomedical research, societal aspects of rare diseases, as well as university life and other general topics. Our themes were of particular interest to students considering health-related and science careers.

We warmly welcomed the following partners to our Rare Disease Day:

The lectures of our 2025 Rare Disease Day event are available to view here: 

https://rhul.hosted.panopto.com/Panopto/Pages/Sessions/List.aspx?folderID=5beba30a-bfaf-47f6-84eb-d4813122adc7

If you have any questions about our Rare Disease Day 2025 or future events please email Prof Rafael Yáñez at rafael.yanez@royalholloway.ac.uk.

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