Dáil Éireann Debate, Thursday - 19 June 2025
401. Deputy Brendan Smith asked the Minister for Health if she will give detailed consideration to the issues outlined in an awareness raising document, recently produced by a national organisation (details supplied); and if she will make a statement on the matter. [33302/25]
Amharc ar fhreagraIt is estimated that there are approx. 110 people in Ireland living with Duchenne Muscular Dystrophy and the majority are under 18 years of age. Children diagnosed with muscular dystrophy are under the care of a paediatric neurologist who specialises in neuromuscular conditions. There are specialist clinics based in Children’s Health Ireland, the CRC and at Enable Ireland Cork and Cork University Hospital who provide specialised and expert multidisciplinary care.
As the Deputy will be aware, a National Rare Disease Steering Group was established in December 2023 and have finished work their on the National Rare Disease Strategy 2025-2030. I have approved the plan and it is currently waiting for cabinet approval. Historic funding of €1.5m has been provided for rare diseases in Budget 2025 with an additional €5m provided to support the implementation of this Strategy.
It is envisioned that a portion of this funding will be used to bolster Ireland's ERN involvement. Irish expert centres are part of the European Reference Network ERN-NMD. These networks allow the collective expertise in specific rare disease across the European Union to be utilised in the care of Irish people living with rare diseases. In this case ERN-NMD is a virtual network of healthcare professionals dedicated to improving the diagnosis, management and treatment of neuromuscular conditions.
Raising awareness about rare diseases is one of the core tenants of the new National Rare Disease Strategy. This includes increasing awareness amongst the public, people living with a rare disease and their families, healthcare professionals and policy makers about all rare diseases, including Duchenne Muscular Dystrophy.
As part of this, my Department will give consideration to the awareness supplied document, Understanding DMD.
