Report

21st May 2024

STUDY IDENTIFIES RED FLAGS OF RARE DISEASE

m4rd News, raredisease, Report, Research M4RD, M4RD red flags survey, rare disease, red flags

Published in Orphanet Journal of Rare Diseases 21st May 2024: A new study, by Medics4RareDiseases, has identified seven ‘red flags, or clinical clues, that point to a patient having an […]

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 […]

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 […]

26th October 2021

Whose Voice Is It Anyway?

Jo McPherson M4RD, Patient Advocacy Groups, Report, UK Rare Disease Framework M4RD, NHS England & Improvement, NHSE&I, patient voice, RareQOL, UK Rare Disease Framework, WhoseVoice

On Thursday 27 May 2021 Sondra Butterworth, CEO of RareQoL and founder of the #WhoseVoice campaign, and Lucy McKay from M4RD hosted an engagement session on the UK Rare Diseases […]

25th June 2021

Reflections on rare diseases: state of the nation 2021

Jo McPherson daretothinkrare, disease, raredisease, Report Baroness Blackwood, Public policy projects, rare disease, reflections on rare diseases, Report, State of the nation

Starting a conversation Back in 2019, Baroness Blackwood spoke at the British Paediatric Surveillance Unit (BPSU) rare disease summer tea party where she stated “we need national debate on rare […]