UK Rare Disease Framework

26th June 2026

Reflections from ECRD 2026: Putting People at the Centre of Rare Disease Care

Helen Maginnis Healthcare policy, Rare Disease, UK Rare Disease Framework diagnosis, Diagnostic odyssey, ECRD 2026, European Conference on Rare Diseases, Eurordis, Healthcare professionals, Holistic care, Medics for Rare Disease, mental health, Patient-centred care, Rare Disease Awareness, Rare Disease Care, Rare disease policy, rare diseases 0

Earlier this month, I travelled to Prague with Lucy McKay and Sheela Upadhyaya to attend the 13th European Conference on Rare Diseases and Orphan Products (ECRD 2026) on behalf of […]

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 […]