There are
7000+
rare diseases
but just
9
conditions tested in the UK
we represent
14+
collaborative member groups
ABOUT THE COLLABORATIVE
Rare Diseases disproportionally affect children and diagnostic delays result in unnecessary suffering and undue burden on the health service. Newborn screening has the power to dramatically improve children’s lives, by facilitating early access to treatment, maximising the chance for eligibility for treatments and reducing the chance for serious effects of disease prior to treatment.
The Newborn Screening Collaborative are a collective of UK rare disease charities, who have joined together to push for positive progress in the field of newborn screening and early intervention. This site brings together resources and materials to help current and new member charities/advocates with the process.
CAMPAIGN VIDEOS
Stay updated with the latest news and developments in the field of newborn screening and early intervention. Access valuable insights and information to stay informed and engaged.
The current UK screening programme only covers a limited number of conditions, leaving many families without the early diagnosis that could make a crucial difference. To raise awareness and drive change, we’ve created two campaign videos that highlight the urgent need for expanded screening and the profound impact it can have on children’s lives.