Improving treatment access for rare disease patients and caregivers in Europe

Accessing treatment for a rare disease or rare cancer involves far more than clinical decision-making. Across Europe’s fragmented healthcare landscape, patients and caregivers must navigate medication collection, home delivery availability, financial pressures, and service reliability — factors that directly shape treatment continuity and quality of life.

This study report presents findings from a five-country European survey conducted by Rare Patient Voice and Sciensus, examining how patients experience treatment access, delivery models, and associated burdens across diverse health systems.

Download to discover:

• How medication collection time varies across rare disease patients
• The hidden logistical and emotional burden affecting caregivers
• Gaps in awareness and availability of home delivery services
• Variability in homecare reliability and patient experience
• The impact of access models on wellbeing and financial strain

Download your free copy to explore the data and understand how treatment access models can better support rare disease patients and families.