We are thrilled to invite you to this special event to mark the one-year anniversary of the Manchester Rare Conditions Centre. This event will highlight the significant strides Manchester has made in improving the lives of individuals with rare conditions. The aim of this celebration is to showcase the progress the centre has made in […]
Calling all healthcare professionals… dig out your stripey socks and get ready to ‘show your stripes’ as we approach Rare Disease Day on 28th February. Medics for Rare Disease is asking clinicians, allied healthcare professionals and healthcare students to join forces, to help drive rare disease awareness in the run up to the big day! […]
Monday 23rd June 9.30 - 4pm at Edgbaston Park Hotel. LIMITED PLACES - reserve your spot now! Welcome to the IAG2 Face to Face Meeting! Medics for Rare Disease has a vision of healthcare equity for everyone. We have been working with the Department of Health and Social Care since 2018 in order to achieve […]
Join one of two upcoming webinars on either the 27 or 28 October for a first look at Rare Disease Day 2026! Learn more about the resources which have been created and everything that is available for download to use in your campaign. This webinar is for patient advocates, patient organisations, industry supporters and all […]
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 […]
A Hybrid event celebrating DOERS who showcase their Collaboration - Outreach - Co-creation projects with impactful Outcomes. This is your chance to be part of a dynamic, hybrid gathering.
Thinking of running a Rare Disease event in 2026? Whether it’s a seminar, study day, or conference — this session is for you. Join Medics for Rare Diseases and our panel of Ambassadors who successfully organised Rare Disease events last year. Learn the ropes, get inspired, and discover how to make your event a success! […]
Learn how to deliver engaging Rare Disease 101 talks with tips, resources, and insights from experienced ambassadors. Thinking of running a Rare 101 training session in 2026? Whether you’re planning a full session or just have 10 minutes to introduce the basics, this online training is designed to help you succeed. Join our ambassadors—who have […]
Co-hosted by Medics for Rare Disease and King’s Health Partners Rare Disease Network 📅 Date: Friday 6 March 2026 ⏰ Time: 12:00 – 16:45 📍 Location: Great Hall, King’s College London – Strand Campus, WC2R 2LS (In-person event) About the event Medics for Rare Disease is pleased to be co-hosting a half-day, in-person event with […]
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.