Eurordis - Rare Disease Europe

Improve our experience of health care!

This factsheet presents the results of the H-CARE Pilot Survey initiated by European Reference Networks (ERNs) GENTURIS, ERKNet, Lung and eUROGEN, and conducted by Rare Barometer.

Using an Patient Reported Experience Measure (PREM) validated for chronic conditions, the Patient Assessment of Care for Chronic Conditions Short Form (PACIC-S), this survey assesses the healthcare experience of 3905 people living with a rare disease and close family members across Europe.

The factsheet presents key findings of the survey, and recommendations to improve the healthcare experience for people living with a rare disease.

Key findings on patients’ and carers’ experience of medical care for their rare diseases

The factsheet is available in 23 languages below.

Related publications

Setting standards of care quality! Results of the H-CARE Pilot Survey for the development of a validated scale and of a Common Feedback Mechanism to measure healthcare experience for rare diseases in Europe

Scoping literature review on the healthcare experiences of People Living with a Rare Disease and their family carers (coming soon)