New Zealand Pompe Network
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Welcome!

News Flash!

​The PHARMAC Rare Disorders Advisory Committee has RECOMMENDED the funding of 2nd generation enzyme replacement therapy (ERT) Nexviazyme (avalglucosidase alfa) for treating Pompe Disease. This recommendation is for both infantile onset Pompe (IOPD) and Late onset Pompe (LOPD). 
​
​To read the full press release, please click on the link below.
press_release_nzpn__1_.docx
File Size: 17 kb
File Type: docx
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​Welcome to the New Zealand Pompe Network

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This site has been set up by people who have Pompe Disease, specifically for
​people with Pompe Disease, their families, friends and supporters.


We offer support, information, friendship and hope to those affected by Pompe.


There are 12 people diagnosed with Pompe Disease in NZ that we know of.

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​Site created: 7th November 2010
Site updated:
4th September 2025
Thank you for visiting us @ NZPN
  • Home
  • About Us
    • NZPN Board
    • Affiliations
    • NZPN Membership
    • Our Patients >
      • Freda
      • Allyson
      • Christine
      • Dean
      • Samantha
      • Laurie
  • About Pompe
    • What is Pompe Disease?
    • Symptoms
    • Treatments
    • Recommended Links
  • News and views
    • NZPN Conference 2018 Summary
    • Press Releases
    • Personal Media Stories
    • Blog
    • Allyson's Florida Blog
    • PHARMAC & Govt >
      • Party stances on funding Rare Diseases
  • Diagnosing Kiwis
  • Clinical Trials
  • Glossary
  • Accessible NZ
  • Contact us
  • Living with Pompe
  • Donate