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Rare Disease Day 2017

Creating a DNA Helix

Research brings hope to people living with a rare disease

If a disease is rare, should we invest in research to find a treatment? This is a problem facing over 3,000,000 people in England (24 million in Europe) because there are thousands of rare diseases. Although each rare disease affects less than one in 2,000 people, those who are affected suffer on a daily basis due to a lack of knowledge about their rare diseases and often only receive treatment for their symptoms with little hope of recovering from the disease.

On 24 February 2017, Royal Holloway ran it's annual Rare Disease Day event (alongside the international Rare Disease Day) 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.

 

2017 Programme

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

Click here to view the talks given on the day:

  • Welcome, Professor John Wann
  • Introduction to Rare Disease Day, Dr Rafael Yáñez
  • Syndromes Without A Name - the challenges of having an undiagnosed genetic condition, Lauren Roberts
  • Living with Ataxia Telangiectasia (A-T), Sean Kelly
  • Oculopharyngeal Muscular Dystrophy, Dr Alberto Malerba

 

Our 2017 exhibitors

Action for A-T 

AMEND

Ashford and St. Peter's Hospitals

Barbara Zipser, Hellenic Institute, Department of History

Beat SCAD

BioSoc

DEBRA

Genetic Alliance UK 

Genetic Disorders UK

Muscular Dystrophy UK 

Spinal Muscular Atrophy Support UK 

The British Society for Gene and Cell Therapy

The Fragile X Society 

The Ichthyosis Support Group 

The SMA Trust 

Tuberous Sclerosis Association 

 

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, Severe combined immunodeficiency (referred to as ‘child in a bubble’ disease) 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  Dr Rafael Yáñez and co-organiser Professor George Dickson.

Rare Disease Day highlights 2016

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#RareDiseaseDay

@RHULBioSci

  

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