The UK government has released a National Genomic Healthcare Strategy it says is designed to ensure the country is able to offer a predictive, preventative and personalised health and care service for people with rare diseases.
The country, which has already funded two CAR-T therapies, is aiming to become the global leader in the provision of genomic healthcare.
The strategy includes a focus on improving access to diagnosis, services and treatment.
As part of the plan, every person with a rare disease will have a dedicated person responsible for co-ordinating their care, specific information on their condition and treatment regime, while every child with a rare condition will be transferred to appropriate adult services when they reach 18.
Innovation minister Nicola Blackwood, who lives with the genetic condition Ehlers–Danlos Syndrome, launched the new strategy.
"We want to diagnose conditions before symptoms occur. And we want to deliver personalised treatment, informed not just by our general understanding of disease but by our own personal, de-identified medical data – including our genetic make-up," said Ms Blackwood.
The Association of the British Pharmaceutical Industry, that country's equivalent of Medicines Australia, welcomed the announcement.
According to ABPI deputy chief scientific officer,Dr Sheuli Porkess, “Delivering on the Government’s Rare Disease Strategy will be an important part of changing this. By focusing on personalised medicine and genomics, pharmaceutical companies can play a leading role in improving the lives of people with rare diseases.
“We will continue to work with our partners in NHS England, NICE, MHRA and the Department of Health so that people with rare diseases can access the treatments they need."
The UK's National Health Service is about to launch a new service under which it offers whole genome sequencing to every adult and child in the UK with certain cancers and rare genetic conditions. The goal is to ensure personalised treatments specific to each patient.