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Rare Disease Day

A volunteers


2018 theme: Research -

Taking patient involvement to the next level 

This special day aimed 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.

On Monday 26 February 2018, Royal Holloway ran its annual Rare Disease Day event raising awareness of rare diseases and the millions of families who are affected by them. The event included a range of talks, activities and exhibitions.

2018 programme

The full list of speakers, events and activities can be found here.

You can watch the talks here. The presenters on the day were:

  • Welcome, Professor Katie Normington
  • Introduction to Rare Disease Day, Professor Rafael Yáñez
  • The Role of Research Charities for Rare Diseases: The SMA Trust, James Sleigh
  • Genes, Gene Therapies & GM Humans, Professor George Dickson
  • Living with Epidermolysis Bullosa: a Rare Disease of the Skin, Christo Kapourani

Our 2018 exhibitors

Ashford and St. Peter's Hospitals
Action Duchenne
A-T Society
Genetic Alliance UK 
MDS UK Patient Support Group
Muscular Dystrophy UK 
Spinal Muscular Atrophy Support UK 
The British Society for Gene and Cell Therapy
The Ichthyosis Support Group 
The SMA Trust 
Tuberous Sclerosis Association 

Watch our Rare Disease Day film to understand the reasons why we support this important annual event.



About rare diseases research at Royal Holloway

Royal Holloway is a leading institution in the development of novel therapies for rare diseases, including Spinal muscular atrophy, Spinal injury, Ataxia Telangiectasia and Duchenne muscular dystrophy. Our scientists in the School of Biological Sciences are at the forefront in developing innovative techniques in gene and cell therapy. Much of this research is carried out in the labs of our RDD organiser Professor Rafael Yáñez and co-organiser Professor George Dickson.













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