Over 3,000 rare disease voices across Europe responded to the survey ‘Juggling care and daily life: The balancing act of the rare disease community’, providing for the first time robust European data on the impact of rare diseases on everyday lives. The results from this survey show that:
- Rare diseases have a severe impact on everyday life;
- The time and care burden is substancial for a marority of patients and carers;
- Rare Diseases have a strong impact on work-life balance: leading to absence from work, hampered professional activity, economic burden;
- Patients and carers are faced with complex and hard to manage care pathways, which include for example the need to visit different services in a short space of time and lack of communication between service providers;
- Patients and carers feel badly informed about their rights and feel that social services are badly prepared to support them;
- Rare Diseases have a significant impact on the mental health of patients and carers.
The survey was conducted via Rare Barometer Voices in 23 languages across 42 countries in the scope of INNOVCare.