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SMA Ireland Day of Action on Spinraza – World Rare Disease Day, Feb 28th 11am

SMA Ireland are planning a Day of Action at Dáil Éireann on Thursday 28th February,…

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SMA Ireland Statement on Latest Developments in HSE-Spinraza Scandal

SMA Ireland is today deeply concerned at the ongoing conduct of the HSE and Government…

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[Virgin Media News] Minister Simon Harris responds to #SpinrazaNOW campaign

Minister Simon Harris saying that the issue with Spinraza availability does not only lie with…

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[Irish Mirror] Irish mother pleads with government to approve ‘miracle-drug’ that could save her son with life-threatening disease

An Irish mother has made an emotional plea to Health Minister Simon Harris and the…

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[Herald] ‘Don’t let these kids die’ – Protesters take drug fight to the Dail

Health Minister Simon Harris has been told his decision on whether to grant access to…

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[Independent] Plea: Decision on drug approval is ‘life or death’

Health Minister Simon Harris has been told his decision on whether to grant access to…

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[RTE] Coverage of #SpinrazaNOW event: Call for funding for ‘life-changing’ drug

Campaigners have called for State funding for Spinraza, a 'life-changing' drug used in the treatment…

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[Virgin Media News] Report on #SpinrazaNOW Campaign for SMA Sufferers

Virgin Media report on the #SpinrazaNOW campaign at Leinster house today. SMA sufferers travelled from…

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Statement by Lorraine O’Malley at the #SpinrazaNOW event at Leinster House – 20 Sep 2018

This statement was read outside the Dáil by Lorraine O'Malley, mother of Grace O'Malley a…

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Event: #SpinrazaNOW at Dáil Éireann – Thursday 20th September – 11am

The #SpinrazaNOW campaign will be at Leinster house on Thursday 20th of September at 11am.…

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[Galway Bay FM] Keith Finnegan Show Galway Bay FM – Karen Mannion on her brother Gearóid’s stories, SMA and Spinraza

Karen Mannion talks about her brother Gearoid P. Mannion who had SMA type 2 and…

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The Long-Lost Short Stories of Gearóid P. Mannion

A great story about a collection of essays and short stories written by a Clifden…

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