If you work in rare diseases or rare disorders, this conference is one you cannot miss. Come and hear talks and discussions by leaders in academia, biotech, pharmaceuticals, diagnostics, clinical research, informatics, healthcare and regulatory bodies at the world’s most informative virtual conference. Patients living with rare diseases are often persistently misdiagnosed or undiagnosed, potentially […]
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 […]
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 – […]
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 […]
The RCGP Northern Ireland Faculty is delighted to be collaborating with the Northern Ireland Rare Disease Partnership (NIRDP) to host a 'Top Tips for Managing Rare Disease in GP' evening. Topics provided aim to help you manage patients with rare disease. The event is hosted by the RCGP Northern Ireland and some aspects may be […]
This FREE live 90-minute webinar will focus on the diagnosis and management of rare diseases, in particular haematological conditions. The fundamentals of a rare disease - what is it? Who is affected? What's impact and challenges when a condition is rare? What do rare conditions have in common? How can clinicians seek help, advice and […]
Join this webinar to explore the practical things patient groups can do to make sure they are engaging with HCPs in the most beneficial way. Most rare diseases are not concentrated in one area or country and do not affect one singular body system, which makes finding healthcare professionals (HCPs) or specialists who understand them […]