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 […]
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 concerns and reflections on the impact of diagnosis, investigation and management. Physicians, surgeons and indeed all healthcare professionals continue to learn from and be inspired to […]
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 Section will be using its platform to allow people with lived experience and other stakeholders to provide insight into genetic conditions, that are usually taught from […]
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 have an associated mental health co-morbidity, and at a population level, the community live with the increased psychological impact associated with the rare disease journey […]
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 4:00pm Lunch will be provided. Our focus is on bringing the network together, strengthening ties and finding opportunities for collaboration. Our keynote speakers (to be […]
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 have the chance to speak to medical experts from the UK and abroad, as well as the chance to meet other families/individuals affected by WS. […]
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 programme will feature an invited speakers’ plenary session on “Successes and Challenges of Genomic Medicine”, hosted by Dr Ruth McGowan, Consultant Clinical Geneticist, Royal […]
