Helen Maginnis

About Helen Maginnis

Posts by Helen Maginnis:

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 […]

16th September 2025

BBC Spotlights Rare Disease Voices: Medics for Rare Disease Ambassadors Making Headlines

Helen Maginnis Ambassador, interview, patient, Rare Disease 101 Ambassador, diagnosis, rare disease

Mainstream media doesn’t often feature rare conditions, but when it does, it makes an impact! Recently, two ambassadors from Medics for Rare Disease – Charlotte Chapman-Hart and Zainab Alani – […]