The European Conference on Rare Diseases & Orphan Products (ECRD) is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape goal-driven rare disease policies and allow for important and innovative discussions on a national and an international level to take place. ECRD 2022 will take […]
Join the North Thames Genomic Medicine Service showcase to find out how genomic medicine is transforming healthcare in their region. Genomic medicine is coming into every-day-practice for multi-disciplinary healthcare professionals across the NHS, improving how we diagnose and treat patients of all ages with cancer and rare or inherited diseases. In North London, Essex and […]
It may be impossible for all doctors to have knowledge of more than 7,000 recognised rare diseases. However, it is feasible for all future and current medical professionals to learn when to suspect a rare disease, to appreciate that rare diseases are collectively common and to recognise the exceptional challenges faced by those affected. At […]
Medics4RareDiseases and FOP Friends, in collaboration with the Hunterian Museum at the Royal College of Surgeons of England, are hosting an evening reception for healthcare professionals, examining the contributions of patients and families to medical advances in Fibrodysplasia Ossificans Progressiva (FOP). Come and find out how patient advocacy can change the course of rare genetic […]
Dive deep into the world of rare diseases at the first Swansea Rare Disease Study Day on 8th March 2025! Why attend? Gain invaluable insights from our expert guest speakers. Learn from our engaging panel discussions. Meet a range of local patient advocacy groups to discover more about the lived reality of those impacted by […]
SOFT UK invites healthcare professionals to a transformative seminar focused on the power of language in supporting families navigating rare genetic diagnoses and ongoing care. This event offers a unique blend of expert insights and heartfelt personal stories, equipping attendees with practical tools to foster meaningful and compassionate dialogue. By attending, you will: Develop your […]
Join the upcoming Rare Disease Grand Round, hosted by the King’s Health Partners Rare Disease Network—bringing together researchers and clinicians across the region to foster collaboration, share insights, and advance rare disease research. This session will focus on hepatobiliary disease, featuring expert talks on cutting-edge research: Mind over MASLD: Unravelling brain dysfunction in steatotic liver […]
Connect with healthcare professionals and students from around the world for a dynamic discussion on rare disease medical training across global contexts. As part of this interactive session, we’ll also deliver a FLASH Rare Disease 101 training showcasing our updated e-learning course - giving you the opportunity to #LearnYourStripes ahead of Rare Disease Day 2026. […]
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 […]
Medics for Rare Disease is proud to support the Swansea Rare Disease Study Day, hosted alongside Swansea University. This free event brings together clinical experts, patient speakers, and multiple charities and advocacy groups to share knowledge and experiences in the field of rare diseases. The day will feature: * Clinical and patient talks from a […]