Rare Disease

13th May 2026

International Nurses Day: Supporting Rare Disease Nursing

Emma Huskinson Healthcare education, Nursing, Rare Disease Global Nursing Network, Healthcare professionals, International Nurses Day, Medics for Rare Disease, nurses, Nursing education, patient support, Rare Disease Awareness, rare disease nursing

It’s International Nurses Day and I would like to do a big shout out to our nursing friends out there! It is so important to recognise the extraordinary contribution nurses […]

13th May 2026

ABPI Annual Conference 2026: turning ambition into action

Sheela Upadhyaya Clinical Research, Conferences & Events, Healthcare policy, NHS, Rare Disease ABPI, ABPI Annual Conference, NHS, rare disease, UK life sciences

On 23rd April 2026 (tube strike day) I managed to navigate my way around London’s transport system to attended the ABPI Annual Conference representing Medics for Rare Disease. The conference […]

24th April 2026

One doctor’s diagnostic odyssey

Emma Huskinson Medical Education, Rare Disease diagnostic delay, Diagnostic odyssey, medical education, Medics for Rare Disease, Patient Story, rare disease, UK healthcare

Doctors are highlighting the serious impact of diagnostic delay on individuals and their families living with rare conditions. Bringing the ‘Five Year Wait’ to life Today Medics for Rare Disease […]

26th March 2026

Too Young, Too Rare: What My PBC Diagnosis Taught Me About Flexibility, Complexity, and Care

Taise Campbell Lived Experience, Patient Story, Rare Disease Autoimmune Disease, Chronic Liver Disease, patient advocacy, Primary Biliary Cholangitis, Rare Disease Awareness, rare diseases, Young Adults & Chronic Illness

Rare diseases are often defined as conditions affecting fewer than 1 in 2,000 people. Individually they are uncommon, but collectively they affect millions of people worldwide. Despite this, many people […]