doctor

11th May 2022

Westminster, Rare Collaboration and Rare Diseases Action Plan 2022

Emma Huskinson daretothinkrare, doctor, M4RD, Patient Advocacy Groups, Report, UK Rare Disease Framework collaboration, LSD Collaborative, M4RD, MPS, Rare Diseases Action Plan, Westminster

Last Monday I attended a reception at the House of Commons to celebrate the 40th anniversary of the Society for Mucopolysaccharide Disease, or MPS. MPS is a member of the […]

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26th November 2021

Become an M4RD Ambassador and a Rare Disease Ally

Jo McPherson Ambassador, daretothinkrare, doctor, M4RD, medicalstudent, patient Ambassador, Clinical Ambassador, doctor in training, M4RD Ambassador, medical student, Patient Ambassador, rare disease

Our Ambassador Programme is now open to new applications – this is your chance to become an M4RD Ambassador and a rare disease ally! About our programme Our ambassador programme […]

11th May 2021

Rare Disease 101 fills the gap in medical education

Jo McPherson Ambassador, daretothinkrare, doctor, medicalstudent, Rare Disease 101 daretothinkrare, doctors in training, interactive tool, medical education, online education, Rare Disease 101, rare disease basics, RD101, tom dunne

Written by Dr Thomas Dunne, Trust Grade SHO in Paediatrics & M4RD Clinical Ambassador When reflecting on your experiences of undergraduate medical education on rare diseases, what comes to mind? […]

16th February 2021

Rare Disease 101 is LIVE!

Jo McPherson daretothinkrare, disease, doctor, medicalstudent, Rare Disease 101, Uncategorised doctors in training, interactive tool, modules, online education, rare disease basics

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 […]

31st January 2021

Priority Two: The key to unlocking The UK Rare Diseases Framework

Lucy McKay doctor, Rare Disease 101, raredisease, Uncategorised

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 […]

15th December 2020

Rare Disease 101 Sneak-Peek

Jo McPherson daretothinkrare, disease, doctor, medicalstudent, Rare Disease 101, Uncategorised doctors in training, interactive tool, modules, online education, rare disease basics

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 […]

14th July 2020

Similarities & Differences in Genetic Counselling in the UK and South Africa

Jo McPherson daretothinkrare, disease, doctor, medicalstudent, Uncategorised access to care, genetic counselling, genetic testing

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 […]

18th June 2020

New Online Tool for Assessing COVID-19 Risk in People With Rare Genetics Diseases

Jo McPherson COVID19, daretothinkrare, disease, doctor, Family support, patient, Research, Uncategorised COVID19, online tool, rare disease

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 […]

15th June 2020

The rare disease patient journey in 2030

Jo McPherson conference, daretothinkrare, doctor, event, medicalstudent, raredisease, Uncategorised ECRD, Eurordis, patient journey

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 […]

31st March 2020

New Treatment for Spinal Muscular Atrophy

Jo McPherson daretothinkrare, disease, doctor, Research, Uncategorised genetics, rare genetic condition, SMA, 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 […]