Students mark rare disease day with fascinating event by Royal Holloway University of London
Ten Year 11 students spent a full day finding out about rare diseases in an interactive online event run by the Royal Holloway University of London. Marking ‘Rare Diseases Day’, the students enjoyed listening to some prestigious guest speakers. These included: Baroness Nicola Blackwood Chair of Genomics England and Member of the House of Lords Science & Technology Select Committee, Prof Alan Parker Professor of Translational Virotherapies at Cardiff University, nurses from Roald Dahl’s Marvellous Children’s Charity (who support young people with rare diseases’ transition to independent adult lives), as well as a host of other speakers from Royal Holloway university and beyond.
The students found the day very interesting and beneficial as two of them have indicated that they would like to follow a career in medicine and others were very interested from a research point of view.
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 more than 9,600 rare diseases, which together affect 3.5 million people in the UK. Rare Diseases Day raises awareness of these conditions and shines a light on the research going into finding cures.
The students took part in two practical sessions where they modelled how X-linked recessive conditions are passed on using coloured solutions and modelled DNA code using beads and string. Rob Haye, Lead Teacher for Science, said: “The benefit to students was to listen, and in some cases speak to, a wide range of professionals working in science, some directly in care positions, others behind the scene in research or technology. This helped them to see where studying Biology can take you and they learned how therapy includes the arts and how society can change to make lives for people with rare disease easier. It showed how Biology is not only about curing a disease when it appears, but working out how to prevent it occurring in the first place. It was a really interesting day that without lockdown we would not have been able to attend, as it is normally a face-to-face event hosted in Surrey. Silver linings and all that!”
The students were privileged to be involved, as Mr Haye has been working with Royal Holloway University on another online event called Biology Masterclass, in which seven year 12 students are going to online lectures provided by their Biology department every Tuesday evening. This led to the Year 11 students being invited to this exciting event.
Thank you to Lewis, Cora, Emily and Peter for sharing some examples of the work they carried out.