When is a rare disease not rare? Answer: when big data gets involved. And the NIHR Rare Diseases Bioresource is all about big data. It aims to sequence the genomes (or complete DNA, including all the genes) of patients affected by rare diseases – and make this data available to researchers and healthcare professionals.

So why the dating game? With a rare disease typically affecting fewer than one in 2,000 people, researchers may need access to thousands of potential matches to find other patients with the same condition: something the era of ‘big data’ makes possible.

Dr Lucy Raymond (CIMR), who is leading the East of England Genomic Medicine Centre that will deliver the 100,000 Genomes Project regionally, said: “We might generate a ‘dating agency’ to try to match our patient with a similar case elsewhere in the world. Patients and parents know that finding the gene abnormality may not help them or their child directly, but it may ensure that others don’t have to wait 20 years for a diagnosis.”