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Rare Disease Day 2021
January 28 @ 12:00 pm - 5:30 pm
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.
On Friday 26 February 2021 we will run a virtual event directed to secondary school years 10, 11 and 12. We will very much maintain the format from previous years, with live talks, live exhibition, hands-on activities and speed-dating. The event will touch on medicine, genetics, genomics, biomedical research, societal aspects of rare diseases, as well as university life and other general topics. It will be of particular interest to students considering health-related and science careers. Lead teachers will provide their school address as part of the registration, and we will ship to them one box of resources per participating pupil. If the school is expected to be in a coronavirus lockdown area on 26th Feb 2021, the school commits to post or deliver the boxes of resources provided by Royal Holloway to the students’ homes, or have them collected by students, ahead of the event. This way the event will proceed regardless of lockdown conditions or whether students attend from home or school.
Please note, for this event we are not able to accept individual bookings, however the recorded lectures will be made available via the Royal Holloway Rare Disease Day website after the event. We very much hope that you will be able to attend our Rare Disease Day event next year.
If you have any questions about our Rare Disease Day 2021 event please email Prof Rafael Yáñez at firstname.lastname@example.org.
• Introduction to Rare Disease Day, Prof Rafael J. Yáñez Muñoz (Prof of Advanced Therapy at Royal Holloway University of London, http://agctlab.org, @rjyanezmunoz)
• Genomics, health innovation and rare disease, Baroness Nicola Blackwood of North Oxford (Chair of Genomics England, Member of the House of Lords Science & Technology Select Committee, https://www.nicolablackwood.com/, @nicolablackwood)
• How to train your virus, Prof Alan L. Parker (Prof of Translational Virotherapies at Cardiff University, https://www.cardiff.ac.uk/people/view/126626-parker-alan, @alanlparker)
Participating schools will be required to commit formally and for the whole event, as per the instructions below:
• The classroom(s) made available in the school for the event will be equipped with one computer with internet connection per participating pupil, as well as a desk/bench area where each pupil will be able to carry out a no-risk lab activity and desk-based activities.
• The classrooms will have a large screen where a Royal Holloway feed will be displayed for lectures and demonstration of hands-on activities.
• The classrooms will have a webcam to relay a feed of their participation in the event. Schools will obtain the necessary consents for video and still pictures to be captured by the organisers.
• Online interaction and feeds will be through Microsoft Teams. The School teachers supporting the participating students will have familiarised themselves with MS Teams ahead of the event.
• All pupils registered by the School will participate for the whole event. The number of participating pupils per School may be capped by Royal Holloway if necessary.
• Monitoring the web-based small-group interactions (with external exhibitors, with undergraduate students in speed-dating and possibly in hands-on activities) will be the responsibility of the Schools, but Royal Holloway organisers will make every effort to have a volunteer present in every virtual room.
• If due to lockdown conditions students have to attend the event from home on 26th Feb, Schools commit to ensuring that the boxes of resources provided by Royal Holloway for each student are posted or shipped to the students, or collected by the students, ahead of the event. This will ensure that the event can proceed regardless of lockdown conditions.