All the updated news related to spinraza

All the news related to spinraza updated in real time

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The wider Kilkenny community has got involved in a social media campaign to highlight the plight of six-year-old Isaac Brennan who desperately needs access to a life-saving drug. Isaac lives with Type 2 Spinal Muscular Atrophy and is unable to walk ...

22 May 2019 at 12:47

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Agony for Kilkenny parents as crucial decision on Spinraza postponed

The parents of a six-year-old Kilkenny youngster battling to access the life-saving drug Spinraza are devastated that a decision due this week on whether or not the drug could be made available has been delayed. Isaac Brennan lives with Spinal ...

17 May 2019 at 16:34

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Plight of Kilkenny youngster and his fight for medication raised in the Dáil

The plight of a six-year-old boy, who is confined to a wheelchair and has a life expectancy of just 20, was highlighted in Dáil Eireann. Deputy Bobby Alyward has asked the Minister for Health, Simon Harris to give Isaac Brennan (6) from ...

14 Nov 2018 at 14:41

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Delight as Spinraza approved for Kilkenny youngster and other SMA sufferers

A life-saving drug has been approved by the HSE for a Kilkenny youngster and other children living with Spinal Muscular Atrophy. Minister for Health, Simon Harris announced today that Spinraza is now approved by the HSE. "This is the ...

11 Jun 2019 at 13:24

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Kilkenny TD welcomes HSE decision to approve Spinraza

Local TD Bobby Aylward has welcomed the decision made by the HSE to approve Spinraza for reimbursement. Deputy Aylward, who has raised the matter on numerous occasions in Dáil Éireann, said that it would be an enormous relief to the ...

13 Jun 2019 at 16:24

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Kilkenny health campaigners tell their stories at public meeting

Members of community groups and the public turned out in force despite the inclement weather last Wednesday evening for a public meeting on disability and healthcare reform. Representatives from campaign groups, including John ...

01 May 2019 at 15:21

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Kilkenny youngster's fight for access to life-saving drug

A crucial meeting over access to a drug for a Kilkenny youngster who lives with a life-limiting condition will take place later this month Isaac Brennan (6) lives with Spinal Muscular Atrophy. He is confined to a wheelchair ...

03 May 2019 at 12:37

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'Door not shut' on access to Spinraza says Kilkenny Minister of State

The parents of Kilkenny youngster, Isaac Brennan were informed last week by the HSE that it was not in a position to fund Spinraza, a drug used to treat Spinal Muscular Atrophy. The HSE said that it would not sanction use ...

27 Feb 2019 at 12:16

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Kilkenny youngster Isaac (7) still waiting on Spinraza

The parents of a Kilkenny youngster who had life-saving treatment approved are calling on the Minister for Health, Simon Harris to ensure that the HSE delivers on their promise. In June Spinraza, a drug used in the ...

16 Oct 2019 at 11:54

Local News

Smiling face of Kilkenny's brave Isaac Brennan

This is the happy face of Isaac Brennan as he gets ready for another round of spinraza treatment. The photograph of the Kilkenny child was taken in Temple Street Hospital by his proud mother Carol as he got ready ...

14 May 2020 at 17:38

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Joy as Kilkenny youngster finally starts his Spinraza treatment

Isaac Brennan (7) who lives with the life-limiting condition Spinal Muscular Atrophy will start his treatment at Temple Street Children’s Hospital tomorrow (Thursday). On Friday after months of waiting the ...

04 Nov 2019 at 15:23

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