Human Rights Commission grants case against PHARMAC for failing to fund rare muscular disorder drug

16 September 2020 - Newshub can reveal a ground-breaking Human Rights Commission case has been taken against Pharmac for failing ...

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Stranded mum with dying daughter makes desperate plea to Jacinda Ardern

13 September 2020 - A distraught mum stuck in New Zealand with her dying daughter Stella amid the COVID pandemic ...

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Kiwi mum pleads with PHARMAC to fund life-changing drug Spinraza for her two children

11 September 2020 - The mother of two young boys with a rare disease is begging PHARMAC to fund a ...

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NICE widens its Zolgensma appraisal due to European Marketing Authorisation

11 September 2020 - England’s NICE is expanding its appraisal of Zolgensma, a gene therapy for spinal muscular atrophy, according ...

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Family battles PHARMAC and eyes Australian move to get 'miracle drug'

15 August 2020 - When Lani McLeod found out her toddler would never walk, she was gutted. ...

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B.C. family nearing finish in race to raise $2.8 million to treat baby's rare disease

8 August 2020 - Parents hope funds will pay for expensive therapy not approved in Canada for type 1 spinal muscular ...

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'I need something to move forward,' says Edmonton mom waiting for approval for son's life saving treatment

24 July 2020 - The family of a little boy in need of a $3 million treatment says they have ...

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'Heartbreaking': Alberta families describe waiting for life-changing drug to be made available in Canada

17 July 2020 - More families are hoping a one-time treatment option for a rare condition will be made available ...

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Clock ticking on Edmonton family's hope for $2.8 million drug treatment for toddler son

 3 July 2020 - Family hoping Alberta Health will pay for new drug that must be administered by mid-July. ...

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Life-changing drug remains unfunded

1 July 2020 - Knowing his body is slowly deteriorating is ‘‘the scariest feeling ever’’. ...

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Germany first in EU to get Novartis’ SMA gene therapy, costing almost 2 million euros

24 June 2020 - Novartis is set to launch its one-off gene therapy Zolgensma for the ultra-rare muscle-wasting disease spinal ...

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Teen with spinal muscular atrophy campaigns for wonder drug to survive

15 June 2020 - Taylor Fincham is one of 35 Kiwi children who suffer from spinal muscular atrophy. ...

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Hawke's Bay mum's heartbreak as PHARMAC refuses spinal muscular atrophy drug for her two kids

9 June 2020 - Skylah-Rose Shaw 8 and her brother Zayden Shaw 10 suffer from spinal muscular atrophy a disease that ...

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B.C. teen with rare disease wins fight to receive costly drug from province

19 May 2020 - Health ministry won't explain change of heart in granting Miles Ambridge treatment for spinal muscular atrophy. ...

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'New Zealand doesn't have help juice' - PHARMAC's decision leaves family stuck abroad

3 May 2020 - Kristie Yeoman says returning home would likely mean death for her daughter. ...

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