An online event to find out about a nationwide public dialogue on the implications of using whole genome sequencing for newborn screening. One hundred and thirty members of the public from around the UK have taken part in a dialogue about the implications for the NHS and society of using whole genome sequencing for newborn […]
The 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 challenges for primary care workers include identifying higher cancer risks in patients, spotting a child with a rare disease and understanding consumer genetic test reports. This hour-long webinar will provide […]
Want 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 the Childhood Tumour Trust. With Greg Smith MP and guest speakers. RSVP to vanessa@childhoodtumourtrust.org.uk
Register 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 […]
This 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 – […]
Register 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 […]
Hear 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, […]
NORD 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 […]
Join 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 Improvement, will deliver the keynote lecture, exploring the importance of patient partnership in the training of our future doctors. Medical students will have the opportunity to […]
SAVE 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 rare diseases and best practices in rare disease education. Dr Lucy McKay (CEO M4RD) and Dr Will Evans (Leeds and PRISM Group and Clinical Lead […]
