Rare Disease Quality Standards QS214
Rare Disease Quality Standards QS214 This year, NICE published the first ever Rare Disease Quality Standard (QS214). This was a huge milestone for the rare community. It was published at […]
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Does Social Justice Exist in Rare Disease? We Need Your Voice!
Patient Advocacy Groups Needed! We want your help and input on ‘Does social justice exist in rare disease?’ We are collaborating with the Children’s Hospital of Eastern Ontario (CHEO) to […]
PRESS RELEASE: Call for healthcare professionals – Take Five Minutes to ‘Learn your Stripes’ for Rare Disease Day
26 January 2026: Medics for Rare Disease today announced the launch of a mini training video that will help HCPs become more ‘rare aware’ in five minutes. Since 2022, the […]
Big Plans for Rare Disease Day 2026!
Get ready to #ShowYourStripes February 28th may seem like a long way off but behind the scenes, Medics for Rare Disease staff are deep in planning mode! It will be […]
Our ambassador annual meet up!
Last month was the Medics for Rare Disease Ambassador’s annual in-person meet up. Ambassadors came together from across the UK to share experiences and attend a number of workshops. Some […]
Meet Megan Pullein – Research Project Manager
Hello, I’m Megan Pullein. I am excited to join Medics for Rare Disease as a Research Project Manager, working on our contribution to the RDI-Lancet Commission on Rare Diseases. A […]
A landmark resolution on rare disease
Last week a landmark resolution on rare disease was adopted at the 78th World Health Assembly. This marks a significant step toward global health equity and inclusion. The Resolution was […]
Calling on ALL healthcare teams – show your stripes for Rare Disease Day!
Calling all healthcare professionals… dig out your stripey socks and get ready to ‘show your stripes’ as we approach Rare Disease Day on 28th February. Medics for Rare Disease is […]
My time working for Medics4RareDiseases by Nadine Jefferies
After an incredible year and half, I have decided to move on from working at Medics4RareDiseases. But before I go, I’d like to look back on my time at this […]
Gallery: First, do no harm – Reflections on a rare bone disease
Medics4RareDiseases and FOP Friends, in collaboration with the Hunterian Museum at the Royal College of Surgeons of England, hosted an evening reception for healthcare professionals, examining the contributions of patients […]