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Rare Disease Day at Royal Holloway

Rare Disease Day is an international day celebrated in over 100 countries to raise awareness amongst the general public, the clinical community, and decision-makers about rare diseases and their impact on people affected and their families. At Royal Holloway we have celebrated the day since 2011 by inviting sixth form, college and secondary school students, and members of the public to attend lectures, an exhibition and to get hands-on experience in our labs.

In Europe, a rare disease is defined as one which affects fewer than 1 in 2,000 people. Most rare diseases are genetic. While each of them is rare, there are over 9,600 rare diseases, which together affect 3.5 million people in the UK at some point in their lives, taking 20% of all health care costs. Rare diseases are a serious health concern and an international priority, but unfortunately often very little is known about them by health professionals and the public alike.

Royal Holloway scientists are at the forefront in developing innovative techniques in gene and cell therapy for several rare diseases including Spinal muscular atrophy, Ataxia telangiectasia and Motor neuron disease. This research is carried out in our Centre of Gene and Cell Therapy.

Rare Disease Day 2024

This year we ran our annual Rare Disease Day event on 28th February 2024. The event was tailored to secondary school years 10, 11 and 12 and we kept to the format from previous years, with live talks, live exhibition, speed-dating and hands-on activities. The event touched on medicine, genetics, genomics, biomedical research, societal aspects of rare diseases, as well as university life and other general topics. Our themes were of particular interest to students considering health-related and science careers.

Our 2024 Exhibitors
We warmly welcomed the following partners to our Rare Disease Day:

Ataxia UK
British Society for Gene and Cell Therapy
Haemochromatosis UK
Royal Holloway AGCTlab
Royal Holloway Augustin Lab
The Sickle Cell Society
UK Thalassaemia Society



If you have any questions about our Rare Disease Day 2024 or future events please email Prof Rafael Yáñez at or Dr Alberto Malerba at

Our 2024 Rare Disease Day Lectures are available to view here.

Rare Disease Day 2023

We were delighted to run our annual Rare Disease Day event on 27th February 2023. Building on many years of success, there was great interest from many schools, resulting in a fully booked event.

The Lectures for Rare Disease Day 2023 included:

  • Introduction to Rare Disease Day, Prof Rafael J. Yáñez Muñoz (Prof of Advanced Therapy at Royal Holloway University of London,, @rjyanezmunoz)
  • Genetic counselling for Rare Diseases, Dr Juliette Harris (Specialist Genetic Counsellor, Ehlers-Danlos Syndrome national diagnostic service)
  • Gene therapy for Duchenne muscular dystrophy, Dr Alberto Malerba (Lecturer in Gene Therapy at Royal Holloway University of London,


Our 2023 Rare Disease Day Lectures are available to view here.

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