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Assurances given on National Office for Rare Diseases

GRDO Chair Ms Avril Daly told the Medical Independent (MI) that the office will be resourced for half of this year, after which it will be fully funded.

The office was called for in the National Rare Disease Plan for Ireland 2014-2018, which was published in July of 2014. According to the plan, a National Office for Rare Diseases would facilitate the co-ordination and timely access to centres of expertise nationally and internationally, and provide up-to-date information on new treatments, management options and clinical trials.

Ms Daly explained that while the HSE National Service Plan 2015 had made no allocation for the office, she had been assured that funding would be made available.

“For many of us, all the stakeholders, we feel that it was the cornerstone of the national plan, because that’s where people would go for information from a medical point of view.”

The establishment of the office would also allow the Irish office of Orphanet, a Europe-wide reference website for information on rare diseases and orphan drugs, to be based within the country. The Irish office had been operating from the UK, however GRDO has been able to secure funding to move the office to Ireland. “The Irish office for Orphanet was being run out of the UK, but thankfully we have been successful in attracting match funding from the European Joint Action on Rare Diseases to bring Orphanet back into Ireland,” Ms Daly said.

“We’re still awaiting an official announcement on the establishment of the rare disease office, but we’re confident. It makes absolute sense because it allows us to place Orphanet in the rare disease office and it also allows us to have a helpline and to provide an information resource.

“With this, we’re at least on the road to putting the other areas of the national plan in place and that’s a significant development.”

When contacted, the HSE commented: “The office will be based in the Mater Hospital and will move to the National Children’s Hospital in time. It is intended that the office will be set up on a phased basis and it is hoped it will be operational later this year.”

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