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 – […]
rare disease
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 […]
Are you ready to become a Rare Disease Ally?
Apply to be an M4RD Ambassador today… Our Ambassador Programme is now open to new applications – this is your chance to become an M4RD Ambassador and a rare disease […]
Get involved with a research study
Are you a medical student? Are you undertaking work involving rare diseases? Your opinions could be invaluable for a research study looking into rare disease advocacy! What is it for? […]
NHS East Genomics Showcase
On Thursday 4th May 2023 NHS East Genomics will be holding an in-person Showcase event at the Kingsgate Conference Centre, Peterborough. As well as celebrating successes from their transformation projects […]
Our time at the European Parliament by Nadine Jefferies
Hello! I’m Nadine, Executive Assistant at Medics4RareDiseases, and I’m thrilled to tell you about my trip to Brussels with CEO Lucy McKay. On the 8th February we visited the European […]
Shining a Light on Silver-Russell Syndrome (SRS) on Rare Disease Day
Join us for this ONLINE event on Rare Disease Day 2023, find out about how rare genetic conditions, like SRS, are diagnosed and hear about what it’s like to live […]
Living Rare Forum
Hosted at the Renaissance Downtown Hotel, the rare disease community will come together in Washington DC for a day of learning, networking and fun! Hear real stories from the community […]