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!
We align with the following UN Sustainable Development Goals: