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 ran a virtual event directed to Secondary School years 10, 11 and 12. We maintained the format from previous years, with live talks, live exhibition and speed-dating, and hands-on activities. For the activities we shipped to participating schools one box of resources per child. If you have any questions or if you'd like to be involved in Rare Disease Day 2022 please email Prof Rafael Yáñez.
Download our Rare Disease Day Schedule 2021 for the full list of speakers, events and activities.
Our 2021 event sponsor was the British Society for Gene and Cell Therapy.
If you missed the event you can watch the lectures and activities via the below links:
- Lectures: Introduction to Rare Disease Day, Prof Rafael J. Yáñez Muñoz; Genomics, health innovation and rare disease, Baroness Nicola Blackwood of North Oxford, How to train your virus, Prof Alan L. Parker, Cardiff University
- Lab Activity: We used a colour based experiment, which students could do at home, to mimic the inheritance of an X-linked genetic disease
- Exhibition: RAREsolutions competition, Cambridge Rare Disease Network; Gene and Cell Therapy, DNA bracelets and tattoos, British Society for Gene and Cell Therapy; A virtual Rare Disease photography exhibition, Same but Different
- Nurse-led innovation: An augmented reality card-based game for young people with life-long conditions, Roald Dahl’s Marvellous Children’s Charity, StoryFutures and Play Well for Life
- Speed dating: A series of quick meetings with Royal Holloway undergraduate students and Rare Disease charity exhibitors
- BSGCT - Tips for Getting into Science
- BSGCT - DNA bracelets and tattoos instructions
- BSGCT - Tattoo descriptions
- Findacure’s essay writing competition
- Roald Dahl's Marvellous Children's Charity
- RAREsolutions challenge film
- RAREsolutions 2021 webpage with info, rules, poster template, etc
- RAREsolutions 2021 PPT presentation in full
- Same but Different virtual Rare Disease photography exhibitions
- Shine presentation on Spina bifida
- SMA UK Quiz - Enter the quiz for a chance to win a voucher worth £15
- SMA UK Poster - RDD 2021
Our 2021 Exhibitors:
British Society for Gene and Cell Therapy, Cambridge Rare Disease Network, Findacure, Gain, Haemochromatosis UK, Play Well For Life, Roald Dahl’s Marvellous Children’s Charity, Same but Different, Shine, Sickle Cell Society, Spinal Muscular Atrophy UK, StoryFutures & TreatSMA
Find out more about our previous Rare Disease Day Events
Rare Disease Day 2020
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.
Previous exhibitors have included:
Action Duchenne, AKU Society, Ashford and St Peter’s Hospital, The Association of the British Pharmaceutical Industry, AT Society, Brittle Bone Society, DEBRA, Ehlers-Danlos Support UK, The Fragile X Society, Findacure, Genetic Alliance UK, Genetic Disorders UK, The Haemochromatosis Society, Ichthyosis Support Group, Muscular Dystrophy UK, Myasthenia Gravis Association, Rare Disease UK, Royal Holloway Computer Science, Royal Holloway History, The Sickle Cell Society, The Society of Biology, Spinal Muscular Atrophy UK, SWAN UK, Treat SMA, Tuberous Sclerosis Association, UK Thalasaemia Society & many others.
Previous Rare Disease Day themes have included:
2020 - We are the 300 million
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