Tommy Broughan (Dublin Bay North, Independent)
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395. To ask the Minister for Health if Ehlers-Danlos syndrome is provided for within the National Rare Disease Plan for Ireland 2014-2018; and if he will make a statement on the matter. [41576/17]

Simon Harris (Wicklow, Fine Gael)
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A ‘rare disease’ is defined in Europe as a life-threatening or chronically debilitating disease affecting no more than 5 people per 10,000. There are an estimated 6,000-8,000 known rare diseases affecting up to 6% of the total EU population (at least 30 million Europeans).

The term Ehlers-Danlos syndrome does not characterise a disease but a group of diseases. However, Ehlers-Danlos syndrome classic type (cEDS) is a form of Ehlers-Danlos syndrome that affects the connective tissue and is characterised by skin hyperextensibility, widened atrophic scars and joint hypermobility.

The National Rare Disease Plan for Ireland (2014-2018) was published in 2014 by the Department of Health. The plan is a generic policy framework for rare diseases. The policy is broad, applies to all rare diseases and underpins the work of the National Clinical Programme for Rare Diseases.