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 […]
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 […]
Same But Different is starting the conversation about baby and child death with their newest exhibit ‘30% Project’. It raises awareness of the statistic that 30% of those diagnosed with a rare disease will die before their 5th birthday.