One of DEBRA Ireland’s core strategic objectives is to lobby those responsible for healthcare spending decisions in Ireland, to ensure that proposed policies are realistic, achievable and sustainable for people living with EB.
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At the beginning of June, The Future of Healthcare Committee published its Sláintecare report.
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There has been much activity across Europe recently to establish rare disease European Reference Networks (ERNs), “groups of highly specialised providers across the EU”.
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The Programme for a Partnership Government and 32nd Dáil was published last week. We have summarised it to find out what it means for people living with EB.
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Thank you so much to Rachel Connors, superstar mum to the incredible Casey, for sharing her story in today’s Irish Examiner.
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