A platform for change CamRARE’s RAREsummit23 welcomes and unites patients, advocates, experts and leaders to address the challenges faced by people affected by rare diseases. By reflecting on progress made, showcasing best practices and new developments, sharing knowledge and experience, and finding ways to work together, the journey towards better diagnosis, treatment and support for […]
We are delighted to be hosting our first hybrid BHD Symposium on 13 and 14 October 2023 in London, UK, and online. This is the first time we will be bringing together the whole BHD research community in person since 2015. The event will showcase the current research into BHD and folliculin and we hope […]
Colleagues are warmly invited to attend the 2023 Glasgow Paediatric Research Day to be held on Friday 3rd November at the Teaching and Learning Centre, Queen Elizabeth University Hospital Campus. The programme will feature an invited speakers’ plenary session on “Successes and Challenges of Genomic Medicine”, hosted by Dr Ruth McGowan, Consultant Clinical Geneticist, Royal […]
The London Rare Disease Showcase aims to shed light on the latest innovations and advancements occurring in the field of rare diseases, with special emphasis on the vibrant rare disease landscape in the UK’s capital. Through a series of captivating talks and presentations, experts and thought leaders from various disciplines will share their insights, experiences […]
Come along to learn more about how your voice can help healthcare professionals learn about rare disease. You will be joined by Kate Tatton-Brown and Alison Pope, Clinical Directors at NHS England, as they present the Genomics Education Programme and why it’s important. Please find the link to the zoom webinar here: https://us06web.zoom.us/j/84487083787 We would […]
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 […]
The aim of the meeting is to inform doctors that rare diseases are collectively common and relevant to every medical career. Very different rare diseases face similar challenges, including navigating healthcare which can be alleviated by a medical profession that understands what living with a rare disease means to a patient and their larger community. […]
Join us to celebrate the end of another highly successful Student Voice Prize. This year’s competition saw more entries than ever before from 30 different universities across 18 countries. We are so grateful to the students and patient groups who contributed to this success. This event is an opportunity for us to share these achievements and […]
“May the fourth be with you!” Cambridge University Rare Disease Society and Cambridge University Genomic Medicine Society are co-hosting a stellar event in Cambridge on Saturday 4 May. The day will feature talks from leading researchers, rare disease patient voices and representation from more than 15 rare disease organisations, as well as presentations from a […]
The 12th European Conference on Rare Diseases & Orphan Products (ECRD) is recognised globally as the largest, patient-led, rare disease policy-shaping 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 […]
