UK LSD Collaborative

UK patient organisations for lysosomal storage disorders face shared challenges in advocacy, research, and policy that are hard to tackle alone.

Partners4Patients Foundation's role

Secretariat: governance, coordination, and project management support

Outcome

A functioning Steering Group and working groups advancing newborn screening, real-world evidence, and sustainable organisation development.

About the project

Serving as Secretariat for the UK Lysosomal Storage Disorders Collaborative, a patient-led partnership of UK LSD patient organisations, organising Steering Group activities, supporting working groups, and coordinating stakeholder engagement so the Collaborative can advance shared priorities such as newborn screening and quality-of-life research while each member organisation keeps its independence and identity.