Rare disease policy Archives - Medics For Rare Disease

Rare disease policy

16th July 2026

Future for Rare Online Webinar

Jo McPherson External Event, Future for Rare, Genetic Alliance UK, Healthcare professionals, patient advocacy, rare disease, Rare disease policy, webinar

Join our friends at Genetic Alliance UK for this online webinar exploring the future of rare conditions policy across the UK. The Future for Rare campaign is gathering views from […]

8th July 2026

Rare Disease Is a Health Inequality: It’s Time for UK Policy to Reflect That

Lucy McKay Healthcare policy, Rare Disease Advocacy Core20PLUS5, Health Equity, Health inequalities, Human rights, medical education, NHS, patient advocacy, rare disease, Rare Disease Action Plan, Rare disease policy

I’ve been levelling up I have been a Commissioner on the Lancet Commission for Rare Disease for two years and we are fast approaching the point of writing up our findings […]

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

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 January 2026

Moving the WHA Resolution on Rare Diseases Forward: From Promise to Action

Jo McPherson GAPRD, Global rare disease advocacy, Multistakeholder dialogue, Rare disease policy, Rare Diseases International, Webinar 2026, WHA Resolution, WHO Executive Board

Join Rare Diseases International for this public webinar where they will discuss the current status of the WHA Resolution implementation, as they approach the World Health Organization Executive Board meeting […]