Dáil Éireann Debate, Wednesday - 29 May 2013
215. Deputy David Stanton asked the Minister for Health the services available here to sufferers of Ehler’s Danlos syndrome; if he has considered the provision of a range of specialised treatments (details supplied) to EDS patients such as those that are available in locations in the UK for sufferers of rare connective tissue disorders; and if he will make a statement on the matter. [25975/13]
View answerEhler's Danlos syndrome is a genetic connective tissue disorder which affects the joints, skin and blood vessels. Diagnostic tests typically include genetic testing, skin biopsies, cardiac evaluation and other biochemical tests. The treatments available include medical treatments to reduce complications from the condition and sometimes surgery for joint instability. My Department is developing a rare disease plan which is dealing with the information requirements, research strategies, diagnosis management and support for patients with rare diseases. This plan will be finalised later this year.
In relation to the services currently available to sufferers of Ehler's Danlos syndrome this is a operational matter and I have asked the HSE to reply directly to the Deputy on this aspect of the question.
