The UK is far behind most European countries for how many conditions are screened for at birth using the heel prick test. Genetic Alliance UK launched a report on the reasons for this, which can be found here. This report is currently endorsed by over forty of our patient organisation members.
Today, Nickie Aiken MP, in collaboration with our member The Archangel MLD Trust has launched a petition to call for a review into newborn screening in the UK. You can sign here. We urge our members and supporters to sign this petition, as a review would give our community another opportunity to say what needs to change to ‘fix the present’ and build a system that will be fairer to the rare disease community, and help children born in the UK have as good a start in life as possible.
Our report examines how the UKNSC has made changes to the criteria used to make decisions, which have disadvantaged rare conditions; and exposes how membership of the committee excludes members of our community. We hope this petition will be a success, and will provide an important platform to take this argument forward.