The concept of the “diagnostic odyssey” and the need for earlier diagnoses of conditions have been hand in hand in the rare disease space since its inception. What is likely less commonplace on this divisive subject is humour. However, with A Rare Find, a short film narrated by Peep Show’s Robert Webb this is about to change.

A Rare Find: in brief

A Rare Find follows a young struggling couple as they contend with the thrills, spills and demonic rage/overtiredness that can often accompany life with a newborn baby. Dad (Jack Robertson, Where It Ends, BBC iPlayer) and Mam (Chantelle Taggart) initially decline the blood spot (“heel prick”) test on behalf of their child… but as the months roll on and their challenges continue, clearly something is wrong with Baby (Cora Lily Taggart) and they eventually reconsider.

The film was developed by production company Media Borne, who were assisted by cinematographer Daniel Vaughan, on behalf of The Newborn Screening Collaborative. John Lee Taggart, head of communications at rare disease group Niemann-Pick UK (NPUK), wrote and directed the film, targeting it squarely at the broader public, hoping the humour elements will provide a softer introduction to the subject to amplify empathy, understanding and advocacy for rare families.

John writes: “The film is in parts hilarious, which is not something most would expect on this subject I’m sure! But Rob’s narration led us to leaning into the humour, rather than trying to work against it, and what we now have is something which I truly believe will help spread the charity’s message. The film is packed with information on this too often overshadowed subject, but due to the comedy and relatability of the characters I am hoping people tune in rather switch off, and that they finish watching wanting to get behind the campaign.”

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. This year they announced three main priorities: review of UK newborn screening policy and processes, review of existing and pipeline sources of evidence, and political engagement.

“The proof is in numbers. You come together as a collaborative and the voice gets heard more.”

Bob Stevens, CEO of the MPS Society and chair of the Newborn Screening Collaborative

Hopes for the film and the broader campaign

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. Earlier this year an explainer animation was released to explore the basic history of the blood spot (“heel prick”) test and explain the motivation behind the Collaborative’s efforts. Interviews with charity leaders and advocates have also 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. Watch this space!

Editor’s note: A Rare Find is set for release on 5 November 2023. You can follow along and support the campaign at the group’s Facebook page: @NewbornScreeningCollaborative

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