All posts by Eva Bearryman

Survey Shows Substantial Impact of Rare Diseases on Daily Life

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EURORDIS-Rare Diseases Europe ran the first Europe-wide survey on the social impact of rare diseases. Results demonstrate a serious impact on everyday life for over 80% of patients and families.

Over 3,000 respondents (including patients and carers) across Europe took the survey ‘Juggling care and daily life: The balancing act of the rare disease community’, conducted via the EURORDIS-Rare Diseases Europe survey group Rare Barometer Voices in the framework of the EU-funded INNOVCare project.

The results show that the time burden of daily care management and care coordination for rare disease patients and families is substantial:

  • 42% of total 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 (in comparison, OECD figures[1] show that 50% of carers (for patients with any type of disease or dependent conditions) provide less than 1.4 hours of care a day).
  • 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.

Dorica Dan, Member of the EURORDIS-Rare Diseases Europe Board, commented, “This survey confirms 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 survey covered ​issues surrounding the impact of rare diseases on daily life, including ​coordination of care, ​mental health​, employment and economic impact. See the full results or read the press release.

[1] OECD (2011), “The Impact of Caring on Family Carers”, in Help Wanted?: Providing and Paying for Long-Term Care, OECD Publishing, Paris.

European Conference on Rare Diseases & Orphan Products

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On 26 to 28 May, our member EURORDIS is organizing the eighth edition of the European Conference on Rare Diseases & Orphan Products (ECRD) in Edinburgh, UK. Rare diseases stakeholders from across Europe will get together and discuss crucial themes for the sector.

This biennial conference is the foremost event that unites all rare disease stakeholders from across Europe (patients and patient representatives, healthcare professionals and researchers, industry, payers, regulators and policy makers). ECRD 2016 will bring together over 80 speakers and more than 700 participants, covering six themes of content over two days: from the latest research, to developments in new treatments, to innovations in healthcare, social care and support at the European, national and regional levels.

The focus in 2016 will be on Game Changers in Rare Diseases. There will also be pre-conference tutorials to ensure participants are equipped to learn as much as possible from the conference.

New meeting formats to enhance the on-site learning experience will be showcased for the first time in Edinburgh and will include a speed networking session, an open-house soap-box lunch session, audience polling, networking lunches and dedicated poster sessions. More info on networking.

Follow the conference on social media with #ECRD2016.

Contact person: Eva Bearryman, EURORDIS, eva.bearryman@eurordis.org