Juggling care and daily life: The balancing act of the rare disease community – report
Report presenting in-depth results of the first European-wide survey on the impact of rare diseases on everyday life.
Over 3,000 people living with a rare disease across Europe responded to the Rare Barometer survey ‘Juggling care and daily life: The balancing act of the rare disease community’, which was conducted in the scope of the EU-funded INNOVCare project, focused on promoting person-centred care for rare diseases.
Available in English.
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Juggling care and daily life: The balancing act of the rare disease community
Related publications
- Results of the 2024 Rare Barometer survey ‘The impact of living with a rare disease: barriers and enablers of independent living and social participation’.
- EURORDIS’ strategy and resources on holistic care
Cite this report
Courbier S. with the collaboration of Berjonneau E., Juggling care and daily life: the balancing act of the rare disease community. EURORDIS-Rare Diseases Europe. May 2017. https://doi.org/10.70790/gjrs4859