Mary Mitchell O'Connor (Dún Laoghaire, Fine Gael)
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310. To ask the Minister for Health the way he ensures information regarding different genetic rare disorders and other conditions that result in deafblindness are available to persons who are deafblind and their families; and if he will make a statement on the matter. [27005/15]

Kathleen Lynch (Cork North Central, Labour)
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Ireland's National Rare Disease Plan was published in July 2014. It is estimated that there are over 6,000 identified rare diseases. We know that many of these conditions are complex, severe and debilitating. There are many challenges for patients living with a rare disease in Ireland including arriving at a timely and correct diagnosis as well as accessing appropriate medications and technology. These issues are at the centre of the national plan.

In addition, the HSE, in collaboration with the Royal College of Physicians Ireland has established a National Clinical Programme for Rare Diseases with a view to improving and standardising the quality of care for patients with rare diseases in Ireland.

At the beginning of June 2015 the Minister officially opened the National Rare Disease Office. This office will act as a national point of reference for enquiries on rare disease services.

In January 2015 the HSE published new guidelines giving practical guidance to all health and social care staff on how they can provide accessible services to patients and clients with a disability. The guidelines were developed by the HSE in partnership with the National Disability Authority. Access to services, as covered in the guidelines, is wide-ranging and relates to all aspects of access including accessible information.

In this context, I have also asked the HSE to reply to you directly in relation to your question.