Patient-centred care

28th July 2026

What Health Care Professionals Are Asking us About Rare Disease – and Why it Matters!

Lucy McKay Healthcare Professionals, Rare Disease Education Continuing professional development, Genetic conditions, genetics, Healthcare professionals, medical education, medical students, Medics for Rare Disease, Patient-centred care, rare disease, Rare Disease 101, Rare Disease Awareness, rare disease diagnosis 0

There are over 6,000 rare diseases, and while it is not possible for healthcare professionals to know about every individual condition, collectively rare diseases cause similar patterns of healthcare challenges. […]

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 […]