The survey 'Juggling care and daily life: The balancing act of the rare disease community' was conducted by EURORDIS-Rare Disease Europe via Rare Barometer Voices and in the scope of the EU-funded projectINNOVCare.
Rare Barometer Voices is a EURORDIS-Rare Diseases Europe initiative and part of the wider Rare Barometer Programme, created to systematically collect patients' opinions on transversal topics and introduce them into the policy and decision-making process.
The objective is to transform patients' and families' opinions and experiences into figures and facts that can be shared with a wider public and policymakers.
The EU-funded project INNOVCare gives a voice to the social and everyday needs of people living with a rare disease and addresses the need for person-centred care in European countries. The project is developing and testing an innovative care pathway that links health and social serviceº using case management.