rare disease

12th August 2022

The Unusual Suspects: rare disease in everyday medicine

Jo McPherson M4RD, rare disease, the unusual suspects 0

We are delighted to announce our 10th annual symposium and, for the first time since 2020, it’s returning live and in-person! SAVE THE DATE… Join us on Wednesday 15th February […]

30th June 2022

What seems to be the problem?

Jo McPherson daretothinkrare, doctor, M4RD, raredisease doctors, ED, emergency department, medical student, rare disease

Grace Knight studied medicine at Keele University and is about to become an F1 in Coventry. Her passion for improving rare disease education was sparked by her younger brothers’ rare […]

24th June 2022

BBS UK Annual Conference 2022

Jo McPherson Annual Conference, Bardet-Biedl syndrome, HCP, rare disease, research 0

This highly-anticipated event provides the unique opportunity to learn about the latest research, treatments, and day to day management of BBS, network with like-minded professionals and more importantly, learn from […]

9th June 2022

Rare Diseases Action Plan – Actions 8 & 9

Emma Huskinson M4RD, raredisease, Report, UK Rare Disease Framework HCP, M4RD, medical education, rare disease, Rare Diseases Action Plan

This is the third instalment of M4RD’s comments on the English Rare Diseases Action Plan. I will now discuss Action 8; Extend the remit of the Genomics Education Programme to […]

31st May 2022

Rare Diseases Action Plan Focus on Action 6

Emma Huskinson M4RD, raredisease, Report, UK Rare Disease Framework HCP, medical education, rare disease, Rare Diseases Action Plan

In this post Emma will focus on Action 6 of the England Rare Disease Action Plan; develop an innovative digital educational resource. This is the first action listed in the Plan […]

26th May 2022

Rare Disease Action Plan 2022 – focus on priority 2, action 7

Emma Huskinson M4RD, Report, UK Rare Disease Framework HCP, M4RD, medical curriculum, medical education, rare disease, Rare Diseases Action Plan, undergraduate

In my last post I introduced some of M4RD’s initial thoughts on the Rare Diseases Action Plan 2022 Action 6. Now I’d like to continue exploring Priority 2; ‘increasing awareness […]

25th May 2022

Understanding rare disease: communicating with patients

Jo McPherson daretothinkrare, M4RD, M4RD Events, M4RD Learn, medicalstudent, Rare Disease 101 Find The One In 17, HCPs, I am number 17, M4RD, medical education, medical student, rare disease

M4RD is delighted to announce that we will be hosting an interactive virtual event exclusively for medical students wishing to learn more about complex communication skills. This event is initiated […]

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24th May 2022

Understanding Rare Disease: Communicating with Patients

Jo McPherson Communication Skills, Diagnostic odyssey, IamNumber17, medical students, online events, Online seminars, OSCE, rare disease 0

Sign up to learn about the role of communication in rare disease from those affected directly, in an interactive FREE virtual event! About this event The event will kick off […]

28th April 2022

A REAL Rare Rollercoaster – from Paramedic to Patient

Melissa Clasen interview, patient, Podcast, raredisease diagnosis, doctor, medical education, rare disease, Renal Nutcracker Syndrome, SMA, Superior Mesenteric Artery Syndrome, Wilkie Syndrome

All aboard this ride! This week, on The Rare Disease Podcast 4 Medics, I had the honor to speak to a paramedic, turned patient. Marie was a practicing student paramedic […]

8th April 2022

Online workshop: Understanding access and reimbursement

Jo McPherson Access to treatment, patient groups, rare disease, Reimbursement 0

Getting wider access to drugs for as many patients a possible is a clear priority in the drug development process, especially for patient groups who are working to secure research […]