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New Zealand Pompe Network - Latest News [Page 1]
Funding Of 2nd Generation Enzyme Replacement Therapy (ERT) Nexviazyme (avalglucosidase alfa) For Treating Pompe Disease
Thursday, 7 November 2024, 7:57 pm | New Zealand Pompe Network
People with Pompe disease in NZ have had to rely on compassionate access to drugs, or participation in clinical trials. So, to have NZ finally acknowledging the worthiness of this drug is absolutely a game changer for those of us with Pompe, and those who ... More >>
Rare Disease Day 2020
Friday, 28 February 2020, 7:31 pm | New Zealand Pompe Network
New Zealand Pompe Network Allyson Lock, MNZM An open letter to New Zealand Prime Minister, Jacinda Ardern “Know us by our deeds”. This was the headline next to your picture on the cover of Time Magazine, for all the world to see. I saw it. I’m ... More >>
New Zealand Pompe Network
Saturday, 21 September 2019, 11:53 am | New Zealand Pompe Network
Rare disease crusader, Allyson Lock, received the Member of the New Zealand Order of Merit for services to people with rare disorders at Government House, Wellington on Thursday 19th September, the day after her 55th birthday. More >>
Government breaks promises to Pompe disease sufferers
Friday, 5 July 2019, 10:22 am | New Zealand Pompe Network
The New Zealand Pompe Network (NZPN) recently presented a petition at Parliament asking that the House of Representatives urge PHARMAC to fund Myozyme for Late Onset Pompe Disease (LOPD), and also urge the Minister of Health to provide additional ... More >>
Rare Disease Day Award goes to Pompe Fighter
Thursday, 28 February 2019, 9:11 am | New Zealand Pompe Network
Allyson Lock will be awarded the Rare Disease Day Patient Advocacy and Support Award on Rare Disease Day, Thursday 28 February. The award will be presented at Government House by Her Excellency the Rt. Hon Dame Patsy Reddy, Governor General of New Zealand. More >>
Three-Year-Old unable to access Life-Saving Treatment in NZ
Monday, 14 January 2019, 1:42 pm | New Zealand Pompe Network
A little Kiwi girl currently living in Texas with her Kiwi parents is unable to live in New Zealand because the medicine she needs to survive is not available to her here. More >>
Rare disease group calls on Govt to honour election pledge
Sunday, 25 March 2018, 1:49 pm | New Zealand Pompe Network
The New Zealand Pompe Network has called on the new Government to honour its election pledge to establish a separate fund for rare diseases like Pompe Disease. More >>
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 >>
