The theme for this year's global awareness campaign is: ‘we are the 300 million’, emphasising the number of people affected by rare diseases worldwide.
Following our successful annual events held at Royal Holloway since 2011, we will once again host a Rare Disease Day in 2020 on Wednesday 26 February.
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.
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.
The programme opens with an introduction to Rare Disease Day by the event organiser, Professor Rafael Yáñez, Centre of Gene and Cell Therapy, Department of Biological Sciences. There will be two keynote talks on Caring for a child with a rare disease by Mr Gennadiy Ilyashenko and Making sense with antisense by Dr Linda Popplewell, Lecturer in Biomedical Sciences, Department of Biological Sciences
Both keynote speaker sessions will be available on Live stream and for later viewing at this link
The event is an opportunity for school visitors to learn about the advances being made to address rare diseases, visit the laboratories in the School of Biological Sciences and meet representatives from national health and patient organisations attending as part of a special exhibition.
The full programme is available to download here:
Rare Disease Day at Royal Holloway is organised by Professor Rafael J. Yáñez-Muñoz, Professor of Advanced Therapy and Director of the Centre of Gene and Cell Therapy, and the Treasurer and President-Elect of The British Society for Gene and Cell Therapy, and Chair of the Genetic Alliance UK. Dr Linda Popplewell is a lecturer in Biomedical Sciences in the Department of Biological Sciences and she is also on the board of the British Society for Gene and Cell Therapy.
The Centre of Gene and Cell Therapy at Royal Holloway delivers research, teaching and outreach in gene and cell therapy, with a focus on rare diseases of the neuromuscular and central nervous systems.