This time last year it became clear to the rare disease community that the COVID-19 pandemic was having a disproportionate and often devastating effect on all aspects of the lives of those living with rare conditions. To remediate this, a large group of UK-based and cross-sector stakeholders, known as ARDEnt, assembled to ensure the capture […]
During times of global disruption, it is often those who are already disadvantaged that are disproportionately affected. Theme 2 of the ARDEnt report highlights this impact on those with rare conditions. Jointly organised with ARDEnt, this webinar will examine how the reduction to healthcare, social services and SEND (special educational needs and disabilities) education has had a devastating impact that […]
The Unusual Suspects: Rare disease in everyday medicine is returning to The Royal Society of Medicine on 9th February! The M4RD Annual Symposium has been a popular event in the rare disease […]
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 […]
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 […]
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. […]
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 […]
