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. […]
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. […]
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 […]
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 […]
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? […]
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 […]
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 […]
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 […]
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 […]
by Dr Alexandra Downes, Paediatric Registrar My Rare Disease journey began in the second year of my Human Genetics degree at University College London. I still remember to this day […]
Rare Diseases affect 3.5 million people in the UK. People with rare conditions take an average of FIVE years to reach a diagnosis. They often experience diagnostic delay because healthcare […]