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.
"Hadid and I" is a concept short film which was produced in support of our organisation by one of our member group's leads, Niemann-Pick UK's Head of Communications, John Lee Taggart. The film touches on the diagnostic odyssey, men's mental health, the impact of rare diseases, and much much more...but with a comedic twist largely not present in films which concern this sort of subject matter.
We hope you enjoy the film - we wish to say a huge thank you to all involved for helping to bring further awareness to lysosomal storage disorders and our small charity.
We align with the following UN Sustainable Development Goals:
