CMTC – More Than Just a Bruise
by Nadine Jefferies The moments after a baby is born – already a rollercoaster of emotions for any parent –are only amplified if your baby has a rare condition. Lex […]
Uncategorised
Mystery Monday: Have you heard of Porphyria?
Have YOU heard of Porphyria? This week Mystery Monday is focusing on Porphyria! Thank you so much to the British Porphyria Association for the fantastic resources! Be sure to stay […]
Have YOU heard of Familial Intracranial Aneurysms?
Mystery Monday is BACK and this week we are focusing on Familial Intracranial Aneurysms! Thank you so much to HBA Support for the fantastic resources! Be sure to stay in […]
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 […]
7 Ways you can gear up for Rare Disease Day on February 28th 2023
Rare disease day highlights the impact of rare disease on millions of people all around the world. There’s loads of ways you can get involved to support this incredible day, […]
From Genetics Undergraduate to Paediatric Registrar
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 […]
#showyourstripes for Rare Disease 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 […]
Not your usual heart attack
Heart attacks may not be rare but SCAD is! Today is World Heart Day and although heart attacks may not be rare, there are other causes of heart attacks that […]
The M4RD team has just got bigger…
We’re excited to announce the appointment of our new part-time Operations and Finance Manager, Jo McPherson. Many of you will already recognise the name because Jo has been helping out Lucy […]
After 31 years with the BPSU Richard Lynn has retired!
Richard Lynn has retired after 31 years as the British Paediatric Surveillance Unit’s Scientific Coordinator and M4RD would like to thank him for advocating for those affected by rare disease. Richard started […]