Red Flags Survey – an update
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 […]
Jo McPherson
About Jo McPherson
Posts by Jo McPherson:
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 […]
A dual perspective on genomic medicine
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 […]
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 […]
Student Voice Prize Essays Published
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 […]