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 […]
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.
The Oxford Rare Disease Society (OxRare) and the Sherrington Society are excited to welcome you to “Connecting the Dots” – our first Oxford University Student Rare Disease Conference, taking place Sunday 23rd February, 9:30–17:00 at Magdalen College, Oxford. We’re supported by Medics for Rare Disease and our kind sponsors. Join us for this exciting opportunity […]