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. Next year will be our 10th year of celebrating this special day - we hope you'll be able to join us!
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 6-8,000 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 and Motor neuron disease. This research is carried out in our Centre of Gene and Cell Therapy.
If you would like to attend Rare Disease Day or get involved please get in touch.
We held our 2019 event on 26th February. The full list of speakers, events and activities can be found here.
Our 2019 speakers:
- Welcome, Professor Paul Layzell, Principal, Royal Holloway
- Introduction to Rare Disease Day, Professor Rafael Yáñez, Rare Disease Day event organiser, Director of Centre of Gene and Cell Therapy
- Illuminating the Rare Reality, Dr Jayne Spink, Chief Executive, Genetic Alliance UK; Chair, Rare Disease UK
- Delivering gene therapy for muscular dystrophy, Professor George Dickson, Professor of Molecular Cell Biology
Our 2019 exhibitors included:
- Ashford and St. Peter's Hospitals
- Action Duchenne
- Action for A-T
- Genetic Alliance UK
- Muscular Dystrophy UK
- Rare Disease UK
- Spinal Muscular Atrophy UK
- SWAN UK
- The British Society for Gene and Cell Therapy
- Treat SMA
- Tuberous Sclerosis Association
AKU Society, The Association of the British Pharmaceutical Industry, Brittle Bone Society, DEBRA, Ehlers-Danlos Support UK, The Fragile X Society, Findacure, Genetics Disorders UK, Ichthyosis Support Group, Myasthenia Gravis Association, The Society of Biology , UK Thalasaemia Society & many others.
Previous Rare Disease Day themes have included:
2018 - Taking patient involvement to the next level
2017 - Research brings hope to people living with a rare disease