Become an M4RD Ambassador and a Rare Disease Ally
Our Ambassador Programme is now open to new applications – this is your chance to become an M4RD Ambassador and a rare disease ally! About our programme Our ambassador programme […]
rare disease
Maximising engagement with healthcare professionals
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 […]
Diagnosis and Management of Rare Diseases
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 […]
The International Rare Disease Showcase
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 […]
Top tips for managing rare disease in GP
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. […]
Lessons learned from the COVID-19 pandemic: Rare disease health and social care coordination
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 […]
Lessons learned from the COVID-19 pandemic: Looking to the future with The UK Rare Diseases Framework
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 […]
Not your usual heart attack
Heart attacks may not be rare but SCAD is! Today is World Heart Day and although heart attacks may not be rare, there are other causes of heart attacks that […]
The impact of living with Myotonic Dystrophy
Doctors are patients too Genevieve Allum is a 34 year old GP who specialises in Dementia and lives on South Coast with her partner. Genevieve was diagnosed with Myotonic Dystrophy […]
Wolfram Syndrome UK and WellChild International Virtual Conference (Part 1)
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 […]