UK LSD Collaborative
A Rare Find

Film & Campaign Description

A Rare Find is a comedy short film with a difference...as it hopes to raise awareness and start conversation surrounding newborn screening, the blood spot/heel prick test*, and the desperate need for positive progress within the current UK newborn screening programme (which at present, screens for only 9 conditions, for context the USA screen for up to 59!)

Life with a newborn is hard enough, as our struggling young parents (Jack Robertson & Chantelle Taggart) find, but the challenges of a long “diagnostic odyssey” can make this even harder. Early screening can be a huge positive step to find out if a rare condition is present, as early intervention and therapy is absolutely key.

This film was made possible thanks to the support of 16 small rare disease charities from The Newborn Screening Collaborative (a UK LSD Collaborative led initiative), including; AGSD - UK, ArchAngel MLD Trust, Batten Disease Family Association, Cure and Action for Tay-Sachs - CATS Foundation, Children's Heart Federation, Fragile X Society, UK, The Gauchers Association, Max Appeal, MLD Support UK, MPS Society UK, Muscular Dystrophy UK, Niemann-Pick UK, Pompe Support Network & Spinal Muscular Atrophy UK.

Written & Directed by John Lee Taggart | Narrated by Robert Webb | Starring Jack Roberston, Chantelle Taggart, Cora Lily Taggart & Chris Houghton-Coldwell | Featuring Oliver Cape, Chloe Taggart & John Lee Taggart | Produced by Chris Thompson (Media Borne) | Director of Photography Dan Gregson | Cinematography by Daniel Patrick Vaughan | Edited by Jack McBride | Production Coordinator Rebecca Gallagher | Production Assistant Johno Ramsay | Poster Artwork by Lingxi Zhang

UK LSD Collaborative

The UK LSD Patient Collaborative Group is comprised of patient organisations representing those affected by Lysosomal Storage Disorders (LSDs). We have joined together to form an action group to advocate and work on behalf of LSD patients and their families in the UK. The group is made up of representatives from 7 charities in the UK who provide support and information to patients and families affected by different LSDs. Together we represent over 70 rare and ultra rare diseases and almost 2500 patients and their families.

Our campaign, The Newborn Screening Collaborative, brings together our existing member groups along with other rare disease charities to push for shared positive progress within the world of early screening, intervention, and action. "A Rare Find" is the start of what we hope will be a productive and impactful campaign!