Establishing a Community of Practice to Maximise Impact in Rare Neurodegenerative Disease Care

This impact project builds on the NIHR-funded "Improve APS" study, which explores health and social care for people with rare neurodegenerative conditions, specifically Atypical Parkinsonian Syndromes (APS). While the main study uses Realist Review and Systems Thinking, this initiative focuses on translating findings into practice. Its core aim is to create a Community of Practice (CoP)
uniting people with lived experience, carers, professionals, commissioners, researchers, and policymakers. The CoP will foster collaboration, shared learning, and co-produced solutions, creating a sustainable platform to improve evidence-based service delivery for individuals affected by APS and related conditions.