rare disease

24th April 2026

One doctor’s diagnostic odyssey

Emma Huskinson Medical Education, Rare Disease diagnostic delay, Diagnostic odyssey, medical education, Medics for Rare Disease, Patient Story, rare disease, UK healthcare 0

Doctors are highlighting the serious impact of diagnostic delay on individuals and their families living with rare conditions. Bringing the ‘Five Year Wait’ to life Today Medics for Rare Disease […]

20th March 2026

Does Social Justice Exist in Rare Disease? We Need Your Voice!

Megan Pullein Uncategorised Global Study, Health Equity, patient advocacy, rare disease, Rare Disease Research, RDI-Lancet Commission, Social Justice

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 […]

6th February 2026

Time to Share the Rare… Our New Five Minute Training Video is Available NOW!

Emma Huskinson M4RD Learn, Medics for Rare Disease, Rare Disease 101, Rare Disease Day medical education, rare disease, rare disease day

Medics for Rare Disease’s new, ultra-compact training video is now available to watch here. In the run-up to Rare Disease Day, 28th February, we are striving to get the video […]

6th February 2026

When to Suspect a Rare Disease in Any Practice Setting

Jo McPherson General Practice, live stream, Medscape Education, rare disease, rare disease day

Join Medscape for a live educational session, ‘When to Suspect a Rare Disease in Any Practice Setting’, featuring our very own CEO Lucy McKay. This live-streamed event will take place […]

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27th January 2026

PRESS RELEASE: Call for healthcare professionals – Take Five Minutes to ‘Learn your Stripes’ for Rare Disease Day

Emma Huskinson Medics for Rare Disease, Rare Disease Day, Uncategorised Learn your stripes, medical education, rare disease, rare disease day, RDD2026

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 […]

9th January 2026

Medics for Rare Disease Ambassador & Alumni Brew

Jo McPherson 2026 events, Ambassador program, Community event, Medics for Rare Disease, Networking, Online meetup, rare disease, rare disease advocacy, Virtual event, Volunteer ambassadors

Kick off the New Year with a cuppa and a catch-up at our New Year Ambassador Brew ☕ This relaxed, virtual get-together is a chance for our Ambassador community to […]

Surgeons in scrubs wearing stripy socks for rare disease day

12th November 2025

Big Plans for Rare Disease Day 2026!

Emma Huskinson M4RD, Medical Education, Rare Disease Day, Uncategorised medical education, Medics for Rare Disease, NHS, rare conditions, rare disease, Rare Disease Day 2026, show your stripes

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 […]

5th November 2025

When the Rare is Common: Living with Ehlers-Danlos Syndrome

Jo McPherson Health & Medicine, Medical Education, Patient Stories, Rare Diseases Chronic Illness, EDS, Elhers-Danlos Syndrome, Med Student Life, Misdiagnosis, Patient Story, rare disease, rare genetic condition

When the Rare is Common Hi, I’m Alisha. I’m 26, a medical student, and I have Ehlers-Danlos Syndrome (EDS). Most people haven’t heard of it before, but it’s a rare genetic […]

17th October 2025

King’s Health Partners Rare Disease Grand Round: Hepatobiliary disease

Jo McPherson Clinical research, Genomics, Hepatobiliary Disease, KHP Rare Disease Network, King’s Health Partners, Liver Disease, MASLD, Medical Webinar, Online Learning, rare disease, Rare Disease Research, Translational Medicine

Join the upcoming Rare Disease Grand Round, hosted by the King’s Health Partners Rare Disease Network—bringing together researchers and clinicians across the region to foster collaboration, share insights, and advance […]

3rd October 2025

Salivary Gland Cancer Day: One Community, One Cause. Standing together in Solidarity for Positive Change.

Megan Pullein daretothinkrare, disease, event, Patient Advocacy Groups rare disease, salivary gland cancer

What is Salivary Gland Cancer? Salivary gland cancers are rare with only 0.3% of cancers globally being salivary gland cancers. They can affect the salivary glands (in the mouth) and […]