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, Neurofibromatosis and Motor neuron disease. This research is carried out in our Centre of Gene and Cell Therapy.
Rare Disease Day 2021
On Friday 26 February 2021 we will run a virtual event directed to Secondary School years 10, 11 and 12. We will very much maintain the format from previous years, with live talks, live exhibition and speed-dating, and hands-on activities. For the activities we will ship to participating schools one box of resources per child. Participating schools will be required to commit formally and for the whole event, as per the instructions on our booking page. If you have any questions or would like to get involved in our Rare Disease Day 2021 event, please email Prof Rafael Yáñez at rafael.yanez@royalholloway.ac.uk.
Book tickets to our 2021 virtual event. As part of the event we are very much looking forward to the below lectures:
- Introduction to Rare Disease Day, Prof Rafael J. Yáñez Muñoz (Prof of Advanced Therapy at Royal Holloway University of London, http://agctlab.org, @rjyanezmunoz)
- Genomics, health innovation and rare disease, Baroness Nicola Blackwood of North Oxford (Chair of Genomics England, Member of the House of Lords Science & Technology Select Committee, https://www.nicolablackwood.com/, @nicolablackwood)
- How to train your virus, Prof Alan L. Parker (Prof of Translational Virotherapies at Cardiff University, https://www.cardiff.ac.uk/people/view/126626-parker-alan, @alanlparker)
Our 10th annual Rare Disease Day event was held on Wednesday 26 February 2020. Click here to listen to our Rare Disease Day 2020 speakers.
Download our Rare Disease Day Schedule 2020 for the full list of speakers, events and activities.
Our 2020 event was sponsored by Treat SMA
Our 2020 exhibitors included:
- Action Duchenne
- Ashford and St Peter’s Hospital
- AT Society
- Genetic Alliance UK
- Genetic Disorders UK
- Ichthyosis Support Group
- Rare Disease UK
- Royal Holloway Computer Science
- Royal Holloway History
- Spinal Muscular Atrophy UK
- SWAN UK
- The British Society of Gene and Cell Therapy
- The Haemochromatosis Society
- The Sickle Cell Society
- Treat SMA
Previous exhibitors have included:
AKU Society, The Association of the British Pharmaceutical Industry, Brittle Bone Society, DEBRA, Ehlers-Danlos Support UK, The Fragile X Society, Findacure, Muscular Dystrophy UK, Myasthenia Gravis Association, The Society of Biology , Tuberous Sclerosis Association, UK Thalasaemia Society & many others.
Previous Rare Disease Day themes have included:
2019 - Bridging health and social care
2018 - Taking patient involvement to the next level
2017 - Research brings hope to people living with a rare disease
2016 - Patient Voice: Join us in making the voice of rare diseases heard
