The British Paediatric Surveillance Unit in collaboration with Public Health England will be hosting a symposia series exploring how COVID-19 has impacted on the paediatric service and children and young people. The aim of the symposia series is to consider the impacts of COVID-19 on children and paediatric services. Attendees will be informed on current […]
If you work in rare diseases or rare disorders, this conference is one you cannot miss. Come and hear talks and discussions by leaders in academia, biotech, pharmaceuticals, diagnostics, clinical research, informatics, healthcare and regulatory bodies at the world’s most informative virtual conference. Patients living with rare diseases are often persistently misdiagnosed or undiagnosed, potentially […]
An online event to find out about a nationwide public dialogue on the implications of using whole genome sequencing for newborn screening. One hundred and thirty members of the public from around the UK have taken part in a dialogue about the implications for the NHS and society of using whole genome sequencing for newborn […]
This webinar is about the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) which is part of NDRS As part of the National Disease Registration service (NDRS) webinar series, this webinar will cover: NCARDRS supporting specialised services The impact of COVID-19 amongst people with rare autoimmune rheumatic disease in England Understanding histiocytic disease – […]
Join Medscape for a live educational session, ‘When to Suspect a Rare Disease in Any Practice Setting’, featuring our very own CEO Lucy McKay. This live-streamed event will take place on February 26, 2026, at 2 PM GMT / 3 PM CET and will explore practical insights to help clinicians recognize when a rare disease […]
Join Central and South Genomics for an insightful webinar in recognition of Rare Disease Day, where they will bring together patients, healthcare professionals, and researchers to explore the latest in patient advocacy, genomics and rare disease. This event is for everyone, whether you're from a healthcare background, have been affected by a rare disease, or […]
Rare Disease Day 2026 is your chance to stand with the 3.5 million people in the UK living with a rare disease, and to take one small action that can make a big difference. Since 2022, Medics for Rare Disease has invited healthcare professionals (HCPs), medical students and supporters to #ShowYourStripes by wearing stripy socks […]
This interactive research development workshop brings together clinicians, academics, researchers and industry partners to explore how primary care can better support people living with rare diseases. Using neurofibromatosis type 1 (NF1) as an exemplar condition, the session will examine early recognition, diagnostic pathways, care coordination, and opportunities for research using routinely collected data and digital health tools. Participants will collaborate to identify evidence gaps and develop a patient-centred research agenda grounded in everyday primary-care practice.