Advertisement
This site uses cookies to improve your experience and to provide services and advertising. By continuing to browse, you agree to the use of cookies described in our Cookies Policy. You may change your settings at any time but this may impact on the functionality of the site. To learn more see our Cookies Policy.
OK
Dublin: 11 °C Tuesday 22 October, 2019
RSS

#Spinraza

# spinraza - Tuesday 11 June, 2019

Spinraza campaigners 'finally have hope' as HSE approves access to drug for rare disease Sma

Spinraza campaigners 'finally have hope' as HSE approves access to drug for rare disease

Jun 11th 2019, 2:00 PM 8,381 Views 3 Comments

The drug has been approved for children with SMA Type I, II or III on “an exceptional and individualised basis”.

# spinraza - Wednesday 15 May, 2019

'We need to do right by families': Call for HSE to fund drug for rare disease after NHS approval Spinraza

'We need to do right by families': Call for HSE to fund drug for rare disease after NHS approval

May 15th 2019, 12:29 PM 6,102 Views 4 Comments

Spinal muscular atrophy weakens muscles and causes problems with movement, breathing and swallowing.

# spinraza - Sunday 10 March, 2019

'We are failing these children spectacularly': Row over drug with 'exorbitant' cost rumbles on Spinraza This post contains videos

'We are failing these children spectacularly': Row over drug with 'exorbitant' cost rumbles on

Mar 10th 2019, 8:00 AM 9,106 Views 13 Comments

Negotiations, and clashes, over the price of Spinraza are ongoing behind the scenes.

# spinraza - Thursday 28 February, 2019

'Look in my child's eyes and tell him his life is not worth saving': Parents call for access to medication Spinraza This post contains videos

'Look in my child's eyes and tell him his life is not worth saving': Parents call for access to medication

Feb 28th 2019, 12:52 PM 10,193 Views 28 Comments

About 26 children with SMA, a rare muscle-wasting condition, could benefit from Spinraza.

# spinraza - Monday 25 February, 2019

'A price has been put on the value of life': HSE will not reimburse drug for children with rare condition Spinraza

'A price has been put on the value of life': HSE will not reimburse drug for children with rare condition

Updated Feb 25th 2019, 7:54 PM 22,326 Views 62 Comments

The HSE said the current price of Spinraza – more than €20 million over five years – is not cost-effective.

# spinraza - Sunday 3 February, 2019

'You wouldn't tell a child they couldn't have chemo, but our son is being denied the medication he needs' Spinraza

'You wouldn't tell a child they couldn't have chemo, but our son is being denied the medication he needs'

Feb 3rd 2019, 4:00 PM 18,745 Views 17 Comments

Parents of children with a rare genetic condition are fighting for access to a potentially life-changing drug.

# spinraza - Saturday 7 January, 2017

'If she gets another chest infection she probably won't make it, that’s the reality' SPINAL MUSCULAR ATROPHY

'If she gets another chest infection she probably won't make it, that’s the reality'

Jan 7th 2017, 7:25 AM 31,236 Views 16 Comments

Nellie and Lara are the only two children in Ireland with Spinal Muscular Atrophy Type 1 – an extremely rare genetic condition.

∞

About Us

Follow Us

Corrections

Policies

Content copyright © Journal Media Ltd. 2019 Registered in Dublin, registration number: 483623. Registered office: 3rd floor, Latin Hall, Golden Lane, Dublin 8.

TheJournal.ie supports the work of the Press Council of Ireland and the Office of the Press Ombudsman, and our staff operate within the Code of Practice. You can obtain a copy of the Code, or contact the Council, at www.presscouncil.ie, PH: (01) 6489130, Lo-Call 1890 208 080 or email: info@presscouncil.ie
 

Please note that TheJournal.ie uses cookies to improve your experience and to provide services and advertising. For more information on cookies please refer to our cookies policy.

News images provided by Press Association and Photocall Ireland unless otherwise stated. Irish sport images provided by Inpho Photography unless otherwise stated. Wire service provided by Associated Press.

Journal Media does not control and is not responsible for user created content, posts, comments, submissions or preferences. Users are reminded that they are fully responsible for their own created content and their own posts, comments and submissions and fully and effectively warrant and indemnify Journal Media in relation to such content and their ability to make such content, posts, comments and submissions available. Journal Media does not control and is not responsible for the content of external websites.

Switch to Mobile Site

Sites: TheJournal.ie | Noteworthy | The42 | Fora | Boards.ie | Adverts.ie | Daft.ie