Written answers
Tuesday, 26 March 2019
Department of Health
Rare Diseases Strategy
Tommy Broughan (Dublin Bay North, Independent)
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845. To ask the Minister for Health further to Parliamentary Question No. 357 of 20 November 2018, for which no reply was received from the national clinical programme for rare diseases, if he has received a report regarding awareness raising of Ehlers-Danlos syndrome, EDS; and if he will make a statement on the matter. [13658/19]
Simon Harris (Wicklow, Fine Gael)
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This question relates to a PQ answered by the Health Service Executive, as such it has been referred to the HSE for their attention and direct reply to the Deputy.
After checking Department's records, I can confirm, that my Department has not received a report on raising awareness of EDS. However I am aware of the continuous work of the National Rare Diseases Office in the HSE which provides current and reliable information about all rare diseases to the general public, health care professionals, researchers and policy makers.
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