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!
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!
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 […]