Blog
RSS FeedPosted by Michael Wonder on 29 Oct 2019
Battle for life-saving drugs now harder as PHARMAC absorbs $5m rare disorders fund
29 October 2019 - A $5 million fund set up by PHARMAC in 2014 to address rare disorders no longer ...
Posted by Michael Wonder on 06 Oct 2019
Mum 'hopeful' after baby Kaan Hunter starts $250k a year medication for rare bone disease
5 October 2019 - A mum whose baby was the first Kiwi to be diagnosed with a rare bone disease ...
Posted by Michael Wonder on 31 Jul 2019
Medicines access for cancer must also be Fair for Rare
30 July 2019 - Rare Disorders NZ welcomes the National Party’s recent announcement on cancer care but calls on both ...
Posted by Michael Wonder on 23 Jul 2019
Mum needs $100,000 to treat baby son with infantile hypophosphatasia
23 July 2019 - A baby boy will only live for a few months without a $100,000 medication that is ...
Posted by Michael Wonder on 05 Jul 2019
Government breaks promises to Pompe disease sufferers
5 July 2019 - The New Zealand Pompe Network recently presented a petition at Parliament asking that the House of ...
Posted by Michael Wonder on 25 Apr 2019
NZORD supports rare medicine petitions to government
23 April 2019 - The National Organisation for Rare Disorders supports petitions for more effective, equitable outcomes for people with ...
Posted by Michael Wonder on 17 Apr 2019
Call for funding applications for medicines for rare disorders
17 April 2019 - PHARMAC invites pharmaceutical suppliers to submit funding applications for medicines for rare disorders. ...
Posted by Michael Wonder on 18 Feb 2019
Medicines for rare disorders
13 February 2019 - PHARMAC is working on policy and funding for medicines for rare disorders. ...
Posted by Michael Wonder on 05 Nov 2018
$1 million treatment could save our infants from the orphan disease
4 November 2018 - A $1 million wonder drug labelled as a "game changer" for treating the leading genetic cause ...
Posted by Michael Wonder on 16 Jul 2018
PHARMAC work in funding medicines for rare disorders progressing
16 July 2018 - PHARMAC is progressing work aimed at improving funded access to medicines for rare disorders. ...
Posted by Michael Wonder on 17 May 2018
Proposal to widen access and change the funded enzyme replacement therapy for Gaucher disease
17 May 2018 - PHARMAC is seeking feedback on proposed changes to the funding of enzyme replacement therapy used in ...
Posted by Michael Wonder on 10 May 2018
The Kiwi patients that New Zealand's health system won't help
10 May 2018 - Freda Evans was blocked by security before she could get to the then Prime Minister, John ...
Posted by Michael Wonder on 21 Feb 2018
Charity upset pre-election pledge for separate fund for rare diseases off the table
21 February 2018 - The country's biggest charity helping people dealing with rare disorders is upset the Government has gone ...
Posted by Michael Wonder on 27 Sep 2017
NZ behind rest of modern world in medicines funding
21 September 2017 - New Zealand is lagging behind the rest of the modern world when it comes to funding ...
Posted by Michael Wonder on 17 Sep 2017
Cystic fibrosis sufferers put their hope in a change of Government
17 September 2017 - The parents of a 12-year-old boy who suffers from cystic fibrosis say a Labour victory is ...