EURORDIS Summer School
ONLINEEURORDIS Summer School aims to provide rare disease patient advocates with the knowledge and skills needed to become experts in medicines research and development. Since 2015, researchers are also welcome […]
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The genetics of primary care
ONLINEThe eleventh webinar in The genetics of… series from the Royal Society of Medicine. This webinar will equip attendees with the clinical skills required to help patients presenting with common genetic situations. Frequent […]
Afternoon Tea with the Childhood Tumour Trust
Danesfield House Henley Road, Marlow, Buckinghamshire, United KingdomWant to learn more about Neurofibromatosis Type 1, with a focus on diagnosis and care? Come along to Danesfield House at 1.30pm on Friday 6th August for Afternoon Tea with […]
Wolfram Syndrome UK and WellChild International Virtual Conference (Part 1)
ONLINERegister for your place on this international virtual conference hosted by Wolfram Syndrome UK and WellChild. The 10th WS conference will again be held as virtual events over 2 Saturdays in September 2021. On Saturday 18th September there will be 3 presentations from international speakers and on Saturday 25th September there will be a mix […]
Findings from the NCARDRS rare disease collection discovery phase
ONLINEThis webinar is about the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) which is part of NDRS As part of the National Disease Registration service (NDRS) webinar series, this webinar will cover: NCARDRS supporting specialised services The impact of COVID-19 amongst people with rare autoimmune rheumatic disease in England Understanding histiocytic disease – […]
Wolfram Syndrome UK and WellChild International Virtual Conference (Part 2)
ONLINERegister for your place on this international virtual conference hosted by Wolfram Syndrome UK and WellChild. The 10th WS conference will again be held as virtual events over 2 Saturdays […]
RAREsummit21
ONLINEHear from and engage with a range of stakeholders pioneering change across the rare disease landscape... CRDN's RAREsummit21 is a platform for change. It is the infrastructure that unites patients, advocates, experts and leaders to address the challenges faced by people affected by rare diseases. By sharing knowledge and experience, the journey towards better diagnosis, […]
Free – £158.39
NORD Breakthrough Summit
ONLINENORD Rare Diseases and Orphan Products Breakthrough Summit is back on 18 & 19 October 2021 offering a two-day virtual programme. The summit will discuss the latest updates on: rare disease diagnosis and research genetics and genomics drug development and patient engagement FDA oversight A limited number of free passes may be available to patient […]
Learning together: The importance of patient partnership
ONLINEJoin the RSM to reflect on the principles of patient partnership and patient care in this afternoon prize meeting. Dr Bola Owolabi, Director - Health Inequalities NHS England and NHS […]
Rare disease education: insights on what clinicians know, want and need
ONLINESAVE THE DATE An opportunity for clinicians and rare disease patient advocacy groups/advocates to come along to a lunchtime webinar with Medscape to hear about their large physician survey on […]