Medicine and Me meetings aim to provide an outline of current best practice and future updates for important conditions. They give a direct voice to patients and carers, enabling them to discuss their […]
This webinar continues a new series of webinars that highlights the lived experiences behind genetic conditions. In an effort to highlight experts outside of the medical field the Medical Genetics […]
People affected by a rare and undiagnosed condition live with an accumulative impact on their mental wellbeing. Specifically at an individual level, people living with a rare disease (PLWRD) can […]
This is the first opportunity for the BDB network to get together in person since lockdown! 26th September 2023 – London Registration will be from 9:45 am Start 10:00am Finish […]
You are invited to attend our annual conference on Saturday 30th September 2023, at Mercure Daventry Court Hotel, Sedgemoor Way, Daventry, NN11 0SG 10.00-17.00 (Registration from 9.00 am). You will […]
Lafora disease researchers and clinicians at Instituto delle Scienze Neurologiche di Bologna (ISNB) IRCCS will host the 8th Annual Lafora Disease Science Symposium in Bologna, Italy from October 9-10, 2023. Chelsea’s Hope is hosting registration. Please register individually to attend the in-person Symposium. If you can’t make it in person, we encourage you to register and indicate […]
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 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 […]