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 […]
This two-day free webinar is composed of a multi-professional faculty reflecting the multi-systemic nature of vasculitis, comprehensive updates on key UKIVAS group activities, and research and clinical updates in the field of vasculitis will be addressed. This webinar is a collaboration between the Nephrology Section of the Royal Society of Medicine and UKIVAS. All specialities […]
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 […]
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 […]
The International Rare Disease Showcase is a virtual event like no other, bringing everyone together including, patient groups, researchers, medical professionals, industry representatives and of course patients themselves. Here's what to expect: Three days of interactive sessions led by global experts and advocates Conversations on policy, patient advocacy, access and approval, new technologies, research and data collection with […]
This time last year it became clear to the rare disease community that the COVID-19 pandemic was having a disproportionate and often devastating effect on all aspects of the lives of those living with rare conditions. To remediate this, a large group of UK-based and cross-sector stakeholders, known as ARDEnt, assembled to ensure the capture […]
During times of global disruption, it is often those who are already disadvantaged that are disproportionately affected. Theme 2 of the ARDEnt report highlights this impact on those with rare conditions. Jointly organised with ARDEnt, this webinar will examine how the reduction to healthcare, social services and SEND (special educational needs and disabilities) education has had a devastating impact that […]
The Unusual Suspects: Rare disease in everyday medicine is returning to The Royal Society of Medicine on 9th February! The M4RD Annual Symposium has been a popular event in the rare disease calendar for many years, allowing healthcare professionals at all levels, trainees and students to come together to learn more about the importance of understanding rare […]
This episode refers to theme 3 in the Making The Unseen Seen: Rare disease and lessons learned from the pandemic report and will discuss how safety considerations, travel restrictions, shielding, trial-sites being repurposed to COVID-19 wards, research staff either being called to the front- line or called to replace others who were, have compounded the already […]
Jointly organised with ARDEnt, this webinar will discuss the recommendations the ARDEnt team is using to help inform how the UK is going to deliver its objectives set out in the UK Rare Diseases Framework, published in January 2021. The webinar panel includes members of ARDEnt and those responsible for overseeing the impact of the Framework […]