Written by Dr Katherine Colvin, European Medical Journal (EMJ) Rare diseases are individually rare, but collectively common. Rare diseases, each occurring in fewer than 1 in 2,000 people (EU definition1), affect 3.5–5.9% […]
Join us on Instagram Live Last year, Dr Sandy Ayoub (now alumnus of St George’s University of London) teamed up with the patient group, FOP and Friends, to talk directly to […]
It’s been a while since we shared with you the progress we’ve made on the Red Flags of Rare Disease Survey that we conducted towards the end of 2018. As […]
The Student Voice Prize is back for its 7th year with a new website and logo! The Student Voice Prize is an annual international essay competition brought to you by M4RD in collaboration […]
Dr Charles Steward is the Patient Advocacy & Patient Engagement Lead at Congenica a digital health company based on the Wellcome Genome Campus UK. He has spent 26 years working […]
Melissa Clasen, genetic counsellor, has recently moved from South Africa to work in London. In this article she discusses some of the unique differences in access to care, support and […]
UCL Great Ormond Street Institute of Child Health has responded to the considerable anxiety and confusion among many people living with rare diseases about their level of risk from COVID-19 and the […]
Thanks to the wonders of modern technology and an amazingly powerful online platform #ECRD2020 took place virtually on 14th & 15th May. The conference was organised to take place in […]
We’re working with UCL to find someone to help develop a patient registry for BBS UCL are setting up a professional registry for people in the UK with the rare genetic condition […]
written by Dr Thomas Dunne What is Spinal Muscular Atrophy? Spinal Muscular Atrophy (SMA) is a rare genetic condition that causes progressive weakness and wasting of the muscles. It is […]
