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 […]
emotive Reviews ‘The Unusual Suspects’ During the past year M4RD has been working closely with emotive – an independent, award winning global healthcare communications agency – who have helped us […]
Student Voice Prize 2019 Last month the winning essays from the Student Voice Prize 2019 were published in celebration of Rare Disease Day 2020! You can read all of them […]
Medical Students asked to “Think Rare” Rare diseases affect approximately 350 million people worldwide, yet they are some of the most difficult conditions to diagnose. Despite the number of people […]
Project Y’s mission is to find answers for children with rare diseases, helping to find answers for thousands of families who desperately need them. Project Y supports advancing initiatives such […]
The diagnostic odyssey is a term used to describe the long and arduous journey that many rare disease patients find themselves on in pursuit of a diagnosis. The charity, Rare […]