Eurordis - Rare Disease Europe

3,000 rare disease patients & carers voice difficulties in balancing care & life

Results from the first Europe-wide survey on the social impact of rare diseases are out now!

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 survey was conducted via Rare Barometer Voices (a community of over 5,000 people living with a rare disease who regularly participate in EURORDIS surveys) in 23 languages across 42 countries.

Register to Rare Barometer Voices to respond to future surveys on topics that matter to you as a rare disease patient or carer!

The survey was carried out in the scope of INNOVCare, the first project in the area of rare diseases co-funded by the European Commission’s Employment and Social Innovation (EaSI) Programme, led by the Spanish Ministry of Health and Social Services and with EURORDIS as a partner.

The results

The survey results show that rare diseases have a serious impact on everyday life for over 80% of patients and families, and that the time burden of daily care management and care coordination for rare disease patients and families is substantial:

• 42% of respondents spend more than 2 hours a day on care for their disease.
• 62% of carers reported they spend more than 2 hours per day on tasks related to the disease while nearly a third spend more than 6 hours a day on care for a patient.
• At least 64% of carers are women.
• 38% of respondents declare that they were absent from work due to health-related problems for over 30 days in the last 12 months.
• 41% of patients and carers responded they need special leave at work but could not obtain it.

The survey also covered other issues surrounding the impact of rare diseases on daily life, including coordination of care, mental health, employment and economic impact.

60% of the over 3,000 respondents that answered the survey are rare disease patients and the remainder family members of patients.

See the full survey results or read the press release.

Dorica Dan, Member of the EURORDIS Board and Chair of the Romanian Prader Willi Association, commented, “As a mother of a daughter living with a rare disease, I know only too well the burden that a rare disease can bring to everyday life. This survey confirms what we already knew to be true, that the time burden of care is enormous, as is the effect of a rare disease on social, work and school life. Rare diseases pose real challenges for the person affected as well as their family or those who assume caregiving responsibilities. Patients and families need person-centred care to connect the dots across the various health and social services.”

The current context: European Pillar of Social Rights

The timely publication of these survey results comes after the European Commission’s release of its proposals for a European Pillar of Social Rights. EURORDIS responded to the European Commission’s public consultation on the Pillar to highlight the specific issues surrounding rare diseases for the first time.

Raquel Castro, Social Policy Senior Manager at EURORDIS, commented, “The results of this survey clearly show the severe care and time burden on people living with a rare disease and their carers. These challenges are not always accounted for within the social care system. We need a European Pillar of Social Rights that promotes integrated health and social care as well as adapted employment to respond to the needs of people living with a rare disease and other complex chronic diseases.”

Eva Bearryman, Communications Manager, EURORDIS