This episode refers to theme 3 in the Making The Unseen Seen: Rare disease and lessons learned from the pandemic report and will discuss how safety considerations, travel restrictions, shielding, trial-sites being repurposed to COVID-19 wards, research staff either being called to the front- line or called to replace others who were, have compounded the already […]
Jointly organised with ARDEnt, this webinar will discuss the recommendations the ARDEnt team is using to help inform how the UK is going to deliver its objectives set out in the UK Rare Diseases Framework, published in January 2021. The webinar panel includes members of ARDEnt and those responsible for overseeing the impact of the Framework […]
Learn how you can further your interest and get more involved in the world of rare diseases to benefit both yourself and the rare community The Student Voice Prize is delighted to invite you to our virtual rare disease day event 'Beyond the Student Voice Prize;' an opportunity to connect with peers and patient group […]
The Summit is an exciting one-day event that explores the latest research and technology innovations from Genomics England, partners and complementary fields. Through talks, panel discussions, posters and exhibitions across four themes, you can take part in a valuable programme tailored to your areas of interest. Make connections, learn new skills and help to shape […]
Join QMUL for a special in conversation event with vaccine expert and alumnus Professor Sir Andrew Pollard (Medicine MBBS, 1989), who leads the team behind the Oxford-AstraZeneca vaccine for COVID-19. You will also hear from the Principal, Professor Colin Bailey CBE, Professor Sir Mark Caulfield, Vice-Principal (Health), and our chair, Dr Vanessa Apea, Consultant Physician […]
Every person has two copies of each gene, one inherited from each parent. Most genes are the same in all people, but a small number of them are slightly different. These tiny differences contribute to each person’s unique physical features. Let’s explore rare imprinted genes, a special class where one parental copy is switched off, […]
Researchers developing new treatments for children with rare brain tumours know that it’s not a case of treating children like tiny adults and that surviving the disease isn’t enough. Reducing the damage done by treatments is just as important to the survivor. Discover how researchers are minimising damage and why they think studying rare children’s […]
Getting wider access to drugs for as many patients a possible is a clear priority in the drug development process, especially for patient groups who are working to secure research into and treatments for their rare conditions. However, understanding how to secure access to newly developed treatments is an often-neglected challenge. The processes involved in […]
Sign up to learn about the role of communication in rare disease from those affected directly, in an interactive FREE virtual event! About this event The event will kick off with a session from our guest speaker, who will explore the value of effective and sensitive communication skills when it comes to handling complex conditions, […]
This webinar is part of the popular Genetics of webinar series and will provide an interesting update on the genetic origins of intellectual disability, as well as explore what challenges remain in this area. Our speakers will explore what research is required after a genetic diagnosis of intellectual disability and what families would value the most from the […]