New Zealand Pompe Network - Latest News [Page 1]

NZ Behind Rest of Modern World in Medicines Funding

Thursday, 21 September 2017, 4:26 pm | New Zealand Pompe Network

New Zealand is lagging behind the rest of the modern world when it comes to funding medicines for rare diseases according to the Secretary of the New Zealand Pompe Network Mr. Vaughan Thomas. More >>

Toddler Would be Left to Die Under New Zealand Health System

Thursday, 21 September 2017, 11:52 am | New Zealand Pompe Network

My daughter Molly has an inherited disorder called Pompe Disease – a rare form of Muscular Dystrophy. Although there is no cure for this disease, individuals that suffer from Pompe are given hope to live a relatively normal life with the drug named ... More >>

Pompe Patients Plea for Funding

Wednesday, 20 September 2017, 11:26 am | New Zealand Pompe Network

Pompe Disease patients are being ignored by National Party candidates and the Prime Minister in the lead up to this weekend’s general election. More >>

Where do the parties stand on Rare Diseases Funding

Tuesday, 19 September 2017, 1:25 pm | New Zealand Pompe Network

Where do the parties stand on Rare Diseases Funding leading up to Election 2017? For the last several months the NZPN Board has been working SO HARD lobbying MPs and candidates contesting the upcoming NZ General Election. More >>

National stay silent on rare disease funding

Tuesday, 19 September 2017, 9:33 am | New Zealand Pompe Network

With less than a week before the elections, I still feel that one of the most important issues in this election is not being fully addressed; health! More >>

Health Announcements Slammed by Pompe Disease Patients

Thursday, 7 September 2017, 11:34 am | New Zealand Pompe Network

The announcements made by Prime Minister Bill English in Wairarapa this week have been slammed by patients suffering with Pompe Disease. More >>

 

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