This webinar aims to explore the issues and management of risks related to endogamy and consanguinity and will highlight new advances in pre-natal screening protocols. Consanguineous marriage is still practiced by over 30% of the world's population and in some areas, the prevalence is as high as 60%. Advances in next-generation gene sequencing have led […]
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 […]
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 […]
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 […]
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 […]
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 […]
