Pint of Science Festival
Our Rare Mind and Rare Body events for the International Pint of Science Festival are now live! Join us for engaging research talks and interactive activities in the pub with […]
Loading view.
Journal Club: On the 12th Day of Christmas, a statistician said to me…
ONLINEThe month's leading up to Christmas are a magical time for medical research. The impending holiday season creates a dynamic upsurge in productivity, with researchers finding time to finish off […]
Rare @ Manchester – 1st Anniversary Celebration Event
Citylabs 1.0 Nelson Street Manchester M13 9NQWe 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 […]
Medicine and Me: Young sudden cardiac death
Royal Society of Medicine 1 Wimpole Street, London, United KingdomMedicine 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 […]
Free
Beyond the clinic: Sickle Cell Disease
The Royal Society of MedicineThis 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 […]
Living with Uncertainty & Impact of Trauma Mental Wellbeing Webinar
ONLINEPeople 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 […]
Free
Breaking Down Barriers
LondonThis 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 […]
WS Conference
Mercure Daventry Court HotelYou 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 […]
Annual Lafora Disease Science Symposium
BolognaLafora 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 […]
CamRare’s RAREsummit23
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 […]