Rare Disease Day at Royal Holloway
26 February 2020
Surrey, TW20 0EX, Egham
+441784 443 776
Hosted by Royal Holloway University of London
Royal Holloway celebrated our 10th annual Rare Disease Day. Thank you to all who joined us to celebrate this special day, we hope you will be able to join us in 2021!
Rare Disease 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.
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 6-8,000 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.