Patients & families first: outcomes of the paediatric PHGPS survey

Presented at PVRI 2026 Congress by Maurice Beghetti, Geneva University Hospital

Summary

Families dealing with paediatric PH face significant burdens, including care responsibilities and educational disruptions. Many experience delays in diagnosis and challenges accessing specialised care, often requiring long travel times. The survey highlights the need for improved support, better access to research participation, and tailored healthcare approaches for paediatric patients. Addressing these challenges is essential to enhance care for affected families.

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