Rare Disease 101 is LIVE!
Rare Disease 101 Today Medics4RareDiseases has launched its online, interactive e-learning platform dedicated to teaching medics the fundamentals of rare disease and help them manage both their undiagnosed and diagnosed […]
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Priority Two: The key to unlocking The UK Rare Diseases Framework
Written by Dr Lucy McKay, CEO of Medics4RareDiseases The new UK Rare Diseases Framework has identified four key priority areas for addressing the challenges faced by those living with a […]
Rare Disease 101 Sneak-Peek
Rare Disease 101 Today Medics4RareDiseases has realised a long-term goal: we have created Rare Disease 101 training for medical professionals. RD101 is an online and interactive education module created for […]
Similarities & Differences in Genetic Counselling in the UK and South Africa
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 […]
New Online Tool for Assessing COVID-19 Risk in People With Rare Genetics Diseases
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 […]
The rare disease patient journey in 2030
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 […]
New Treatment for Spinal Muscular Atrophy
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 […]
30% Project: A Conversation About Baby and Child Death
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.