The Department of Health and Social Care (DHSC) has announced a new National Genomic Healthcare Strategy which will aim to improve care for people with rare diseases.
According to DHSC, this service will mean:
- every person with a rare disease will have a dedicated person responsible for co-ordinating their care
- every patient with a rare disease will be given an ‘alert card’, including information about their condition, treatment regime and contact details for the individual expert involved in their care
- every child with a rare condition will be transferred to appropriate adult services when they reach the age of 18, even if that adult service is not the commissioning responsibility of NHS England
This announcement follows the launch of MAP’s recent report ‘Access to Orphan Medicines for Change’ which seeks to outline how access to medicines can be improved for people with rare diseases.
The National Genomic Healthcare Strategy will be developed through collaboration between DHSC with the National Genomics Board according to Health Minister Nicola Blackwood.
“Through the NHS Long Term Plan we want to lead the world in the use of data and technology to prevent illness – not just treat it.
“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.
“In order to make this a reality, I am delighted to announce that we will be working with the National Genomics Board and the broader genomics community to develop a National Genomic Healthcare Strategy.” – Nicola Blackwood, Parliamentary Under Secretary of State for Health
The DHSC announcement also highlighted how the NHS will offer whole genome sequencing to every adult and child in the UK with certain cancers and rare genetic conditions from this year.
Read more from the announcement here.