daretothinkrare

25th March 2021

I am number 17 campaign

Jo McPherson daretothinkrare, disease, interview, patient, raredisease I am number 17, Occipital horn syndrome, OHS 0

This week changemaker David Rose speaks with our CEO Lucy about what it is like to live with the ultra-rare disease occipital horn syndrome, advocacy efforts and the I am number 17 […]

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 0

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 […]

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 0

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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29th October 2020

Rare Disease – Not Just For Specialists

Jo McPherson daretothinkrare, disease, raredisease, Uncategorised clinical knowledge 0

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% […]

6th October 2020

Announcing the launch of the 7th annual Student Voice Prize

Jo McPherson competition, daretothinkrare, findacure, medicalstudent, Uncategorised 0

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 […]

18th August 2020

The Unusual Suspects 2020 – Rare diseases in everyday medicine

Lucy McKay conference, daretothinkrare, M4RD Events, Video clinicians, diagnosis, doctor, doctors in training, event, medical student, rare disease, rsm, symposium, the unusual suspects 2

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 […]

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 0

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 0

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 0

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 […]

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15th May 2020

Patient Registry for Bardet-Biedl Syndrome

Jo McPherson daretothinkrare, disease, medicalstudent Bardet-Biedl syndrome, Data, patient registry, rare genetic condition, UCL 0

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 […]