The Patient Professional Partnership Network (PPPN) brings together patient group representatives, families, healthcare professionals and NHS representatives to improve care and outcomes for people living with lysosomal storage disorders (LSDs).
The network includes patient organisations, doctors, specialist nurses, NHS England, diagnostic services and the British Inherited Metabolic Disease Group (BIMDG). By working together and meeting regularly, members can share experiences, discuss challenges and help ensure that the views and needs of patients and families are reflected in decisions about services and care.
The PPPN meets twice a year and provides an important forum for collaboration across the rare disease community. Facilitated by the UK Lysosomal Storage Disease (LSD) Collaborative, its work helps support consistent standards of care, encourages meaningful patient involvement, and promotes closer partnership between those receiving care and those delivering it.
One of the PPPN's most important achievements has been supporting the development of clinical guidelines for 12 lysosomal storage disorders
One of the PPPN's most important achievements has been supporting the development of clinical guidelines for 12 lysosomal storage disorders. These guidelines provide recommendations on diagnosis, monitoring, symptom management and treatment. They help healthcare professionals across the UK provide more consistent, high-quality care, regardless of where a patient lives or receives treatment.
Through collaboration and shared expertise, the PPPN works to improve access to treatments, support research and drive improvements in care. Most importantly, it ensures that the experiences and priorities of people living with LSDs and their families help shape services, leading to better care, better experiences and better outcomes.
The importance of clinical guidelines
Regardless of location and specialist teams, clinical guidelines exist to ensure the same high standard of care. Learn more about our involvement in their development and see which conditions have so far been published.
