CHF gives recognition to rare conditions

As a member of the Newborn Screening Collaborative CHF is pleased to announce the launch of a new short film which aims to create awareness and encourage conversation, action and change in relation to the screening of newborns in the UK. 

Through our work with the families of children with heart conditions, the importance of newborn screening is abundantly clear. This is why CHF campaigns for the introduction of pulse oximetry testing for all newborn babies and supports the Newborn Screening Collaborative in its work to screen for more rare diseases in newborn infants. Watch the full video here 

A Rare Find

The UK currently screens newborns for just nine rare but serious conditions, whereas many European countries screen for larger numbers of conditions and the USA tests for up to 59. 

A Rare Find follows a young struggling couple as they adjust to life with a newborn baby. The couple initially decline the “heel prick” test on behalf of their child but eventually reconsider after several months when further signs indicate the baby could have health concerns. The film is narrated by actor Robert Webb, who discovered his congenital heart defect in adulthood despite missing many warning signs…  

The short film is just one part of a broader campaign by The Newborn Screening Collaborative to push the subject of screening and to work towards positive progress within the current UK screening programme. Interviews with charity leaders and advocates have been recorded to give deeper insight on the subject, and an accompanying documentary short film (also narrated by Robert Webb) is scheduled for release in early 2024.  

You can follow along and support the campaign at the group’s Facebook page, @NewbornScreeningCollaborative 

About the Newborn Screening Collaborative 

In 2020 ArchAngel MLD Trust brought together 13 principal rare disease patient organisations (which has since grown to 16 and counting) in order to form a new UK collaborative effort, which would be later referred to as The Newborn Screening Collaborative, representing over 500 rare diseases and thousands of patients. The groups seek to work together for positive change within newborn screening in the UK and this year they announced three main priorities they would focus on, which included; Review of UK NBS policy and processes, review of existing and pipeline sources of evidence, and political engagement.  

CHF also gave support to those affected by rare conditions, attending a meeting of the Specialist Healthcare Alliance (SHCA) at Millbank House on Thursday 18th October. SHCA’s focus is on health inequalities associated with rare diseases. (heart conditions in general are not rare, some conditions and associated syndromes can be very rare). The guest speaker at the meeting was Professor Jonathan Benger, Chief Medical Officer at the National Institute for Health and Care Excellence (NICE).

Gift Aid