Framework for Improving Quality of Life For Persons Living with a Rare Disease

This report presents the Quality of Life (QoL) Framework developed by Rare Diseases International (RDI) to better understand and address the needs and priorities of people living with a rare disease (PLWRD) and their families. The framework outlines key dimensions that influence QoL, including health, social inclusion, economic stability, and access to care and support. It aims to guide policymakers, healthcare providers, and patient organizations in designing strategies and initiatives that improve the overall well-being and daily lives of PLWRD.