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 […]
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 […]
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 […]
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 […]
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 […]
Charlotte Cuffe is a CAUK member and her patient story was recently featured in a prestigious global essay competition after she was interviewed by 5th Year Medical Student, Iman Muzafar. Join us to hear Charlotte and Iman in conversation about misdiagnosis and surgical uncertainty. To read Iman's award-winning essay published in Springer Nature go to […]
RAREfest24 A festival as unique as you are. For curious minds of all ages, for FREE. Fri 22 November – Launch Evening ‘Strictly Rare’ An evening of music, performance, comedy, talks and innovative research inspired art to challenge perceptions, dispel myths and imagine the possible. Sat 23 November – Interactive Exhibition Immerse yourself in a […]
Alongside the British Society for Haematology this session will discuss management of sickle cell disease and the appropriate use of blood components. It will also explore diagnostic work up for suspected haematological malignancy and investigate thrombocytopenia.