Rare disease training launched for nurses

The charity, Medics for Rare Disease, is to launch a free 5-minute training video for Rare Disease Day on 28 February 2026, to encourage healthcare professionals to become more ‘Rare Aware.’

In the UK, 3.5 million people in the UK are living with a rare disease, as many as people living with cancer.

While there are thousands of individual rare diseases, they share many characteristics and those affected often face similar challenges – the average wait for diagnosis is 5 years during which time they may be ‘ping-ponged’ between specialists and having unnecessary tests. Despite this, there is no standardised rare disease education included in UK medical school or the standard pre-registration nurse curriculum. specialty training – although genomic is now an area of study required by the Nursing & Midwifery Council.

Medics for Rare Disease CEO Dr Lucy McKay said: ‘We are taught “common things are common” and “hear hoof beats, think horse, not zebra.” That mindset is outdated and damaging. That is why we’ve made it easier than ever to become more “rare aware”. It takes only five minutes to complete our new training video, but it introduces a “rare aware” approach to clinical practice that can make a real difference to your patients living with rare disease.’

The video is available at https://www.m4rd.org/rarediseaseday.