Bridging health and social care
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 sufferers and their families. The theme for 2019 is ‘Bridging health and social care'.
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 in 2019 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.
Royal Holloway is a leading institution in the development of novel therapies for rare diseases, including Spinal muscular atrophy, Ataxia telangiectasia, Duchenne muscular dystrophy, Motor neuron disease and Severe Combined Immunodeficiencies (referred to as ‘child in a bubble’ disease). Our scientists are at the forefront in developing innovative techniques in gene based therapy.Rare Disease Day Programme 2019