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 […]
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Rare Disease – Not Just For Specialists
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% […]
Announcing the launch of the 7th annual Student Voice Prize
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 […]
The Unusual Suspects 2020 – Rare diseases in everyday medicine
In February 2020, a month before lockdown in the UK, we held our annual symposium at The Royal Society of Medicine for the sixth year. ‘The Unusual Suspects: Rare diseases […]
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 […]
Patient Registry for Bardet-Biedl Syndrome
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 […]
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 […]
The Unusual Suspects: Rare diseases in everyday medicine #M4RD2020
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 […]