Royal Holloway celebrates our 10th annual Rare Disease Day
This special day aims to draw attention to rare diseases and the millions of people who are affected by them, highlighting the need for more research and funding to help people affected and their families. We hope you will be able to join us as we celebrate our 10th annual Rare Disease Day!
In Europe, a rare disease is defined as one with an incidence of less than 1 in 2,000 people. While each of them is rare, there are over 9,600 rare diseases, which together affect 3.5 million people in the UK, taking 20% of all health care costs. Rare diseases are a serious public health concern and an international priority, but unfortunately often very little is known about them by health professionals and the public alike.
People who are affected by a rare disease will mostly receive symptomatic and palliative care because there are hardly any curative treatments. Often, relatives will have to stop working and become full-time carers.
Rare Disease Day encourages us to continue finding ways to work together, and it aims to call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for people living with a rare disease. Our 2020 event is sponsored by Treat SMA.
Our Rare Disease Day live stream will be available from 10am on Wednesday 26 February 2020.
Royal Holloway is a leading institution in the development of novel therapies for rare diseases, including Spinal muscular atrophy, Ataxia telangiectasia, Duchenne muscular dystrophy, Neurofibromatosis and Motor neuron disease. Our scientists are at the forefront in developing innovative techniques in gene based therapyRare Disease Day Programme 2020