daretothinkrare

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 […]

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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

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 […]

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 […]

24th March 2020

The Unusual Suspects: Rare diseases in everyday medicine #M4RD2020

Jo McPherson conference, daretothinkrare, event, M4RD Events, Video collaboration, emotive, M4RD

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 […]

17th March 2020

Student Voice Prize Essays Published

Jo McPherson competition, daretothinkrare, findacure, medicalstudent, raredisease

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 […]

21st January 2020

Winner of Student Voice Prize 2019 Announced

Jo McPherson competition, daretothinkrare, findacure, medicalstudent, patient, raredisease

Medical Students asked to “Think Rare” Rare diseases affect approximately 350 million people worldwide, yet they are some of the most difficult conditions to diagnose. Despite the number of people […]

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12th August 2019

‘The Suspense is Killing Me’ is launched to help find answers for children suffering from rare or undiagnosed diseases.

Jo McPherson daretothinkrare, disease, Family support, patient, raredisease, Research children, Family support, rare disease, undiagnosed

Project Y’s mission is to find answers for children with rare diseases, helping to find answers for thousands of families who desperately need them. Project Y supports advancing initiatives such […]

2nd June 2019

The Diagnostic Odyssey – A Mother’s Experience

Jo McPherson congenital, daretothinkrare, disease, interview, patient CSID, Deficiency, diagnosis, Diagnostic odyssey, Diet, Enzyme, Enzyme deficiency, Gastroenterology, Mother, Nutrition, rare, rare disease, Rare reality, Sugar

The diagnostic odyssey is a term used to describe the long and arduous journey that many rare disease patients find themselves on in pursuit of a diagnosis. The charity, Rare […]