Rare Disease Care

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 June 2026

Rare Disease Quality Standards QS214

Emma Huskinson Healthcare education, Healthcare policy, Medical Education, Uncategorised Healthcare Policy, NICE, patient care, QS214, rare disease, Rare Disease Care, Rare Disease Quality Standard NICE QS214 Rare Disease Rare Disease Care Healthcare Policy Diagnosis Patient Care NHS

Rare Disease Quality Standards QS214 This year, NICE published the first ever Rare Disease Quality Standard (QS214). This was a huge milestone for the rare community. It was published at […]