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 […]
rare disease
When the Rare is Common: Living with Ehlers-Danlos Syndrome
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 […]
King’s Health Partners Rare Disease Grand Round: Hepatobiliary disease
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 […]
Salivary Gland Cancer Day: One Community, One Cause. Standing together in Solidarity for Positive Change.
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 […]
BBC Spotlights Rare Disease Voices: Medics for Rare Disease Ambassadors Making Headlines
Mainstream media doesn’t often feature rare conditions, but when it does, it makes an impact! Recently, two ambassadors from Medics for Rare Disease – Charlotte Chapman-Hart and Zainab Alani – […]
BBC Puts a Spotlight on Rare Disease — Ambassador Charlotte Chapman-Hart Tells Her Story
Today the BBC featured our Ambassador Charlotte Chapman-Hart, sharing a powerful first‑hand account of life with a rare condition. In a candid interview with investigative reporter Nicola Gilroy, Charlotte described […]
Beyond the Diagnosis: Mental Health and Rare Diseases
For millions with rare diseases, the journey to understanding and managing their condition can be as challenging as the diagnosis itself. Rare diseases are more common than many realise – […]
STUDY IDENTIFIES RED FLAGS OF RARE DISEASE
Published in Orphanet Journal of Rare Diseases 21st May 2024: A new study, by Medics4RareDiseases, has identified seven ‘red flags, or clinical clues, that point to a patient having an […]
Words Matter by Emily Livesey
Words that hurt It’s 2009 and my body is failing me. I had a flu that I never got over and it has left me weak,nauseous, breathless, and ravenously hungry. […]
Mystery Monday: Have YOU heard of Haemochromatosis?
This week Mystery Monday is focusing on Haemochromatosis? Thank you so much to Haemochromatosis UK for the fantastic resources! Be sure to stay in the loop with Mystery Monday by […]