Dáil Éireann Debate, Tuesday - 3 October 2017
395. Deputy Thomas P. Broughan asked 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]
Amharc ar fhreagraA "rare disease" is defined in Europe as a life-threatening or chronically debilitating disease affecting no more than five 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.
