Gary Gannon (Dublin Central, Social Democrats)
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631. To ask the Minister for Health how his Department intends to address the gaps in information and awareness regarding metachromatic leukodystrophy among healthcare professionals and the public, particularly considering it currently lacks recognition on the HSE website; and if he will make a statement on the matter. [41263/24]

Stephen Donnelly (Wicklow, Fianna Fail)
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Metachromatic leukodystrophy is a rare lysosomal storage disease caused due to deficient activity of arylsulfatase A.

The National Rare Diseases Office (NRDO) was established by the HSE in 2015 on the basis of a recommendation from the Rare Disease Plan for Ireland 2014-2018. The role of the NRDO is to act as the ‘coordination hub’ for rare diseases in Ireland, and as the HSE main contact and driver of rare disease initiatives and projects.

The NRDO offers evidence-based information through the National Rare Disease Information Line. This service provides current and evidenced based information on rare conditions and signposts to available rare disease expertise in Ireland and Europe to:

• People who are affected by a rare or genetic condition, or an undiagnosed, likely rare condition (Syndrome Without a Name)
• Parents, family members and carers of someone with a rare or genetic condition
• Rare Disease patient organisations
• Doctors, nurses, genetic counsellors, social workers and other health care professionals who work with people with rare or genetic conditions
• Scientists who are studying rare or genetic and need information for their research or for people taking part in studies
• Policy-makers and other government agencies