Join us on Friday, 28th February, from 16:00–18:00 at Formby Room, Cedar House, University of Liverpool. This seminar is an exciting opportunity to learn from an expert speaker, hear powerful patient stories, and explore the crucial role of rare disease awareness in medical education. Refreshments will be provided! Programme Highlights Rare 101 – An introduction […]
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 […]
Genomic medicine has a significant impact within the field of primary care. Generally acting as the gateway to the NHS and specialised services, primary care practitioners are crucial in the early identification of genetic conditions and in ensuring appropriate management of a range of conditions. Genomics features in everyday primary care practice in a range […]
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 […]
Genomic testing is a complex clinical topic, with new developments and discoveries taking place at a rapid rate. Often, we focus predominantly on the clinical and scientific aspects of genomics, but it’s crucial to remember that each advancement has life-changing impacts on people across the world. In this webinar, we'll be exploring the lived experiences […]
Have you ever heard of a Delphi Study and not quite sure what it entails? Or maybe you have never heard of Delphi? This webinar will be providing training on what a Delphi Study is and how they are run. PhD Candidate, Shams Al-Ani, studying Pharmaceutical medicine and regulatory affairs at Centre for Pharmaceutical Medicine […]
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 our mission. We are hosting this online workshop in order to develop recommendations for the DoHSC about ‘healthcare professional awareness of rare disease’. We will […]
Ymunwch â ni ar gyfer cyfarfod cyntaf erioed Rhwydwaith Ymchwil i Glefydau Prin Cymru! Join us for the very first RDRN meeting!
A short, casual catch-up for Medics for Rare Disease Ambassadors (cohort 2024/25) starting their second year on the Programme. These informal sessions allow the Ambassadors to ask questions of the team and each other and to share experiences and challenges to inspire each other!