This week Mystery Monday is focusing on Osteogenesis Imperfecta! Thank you so much to Osteogenesis Imperfecta Federation Europe (OIFE) for the fantastic resources! Be sure to stay in the loop […]
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 […]
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 […]
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 […]
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 […]
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, […]
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 […]
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 […]
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 […]