New Zealand Pompe Network
  • Home
  • Our People
    • Our Patients >
      • Freda
      • Allyson
      • Christine
      • Dean
      • Samantha
      • Yakuta
      • Laurie
  • News and views
    • Press Releases
    • Personal Media Stories
    • Blog
    • Allyson's Florida Blog
    • Success Stories >
      • Maryze
      • Brad
      • Monique
      • Ben
      • Brian
  • About Pompe
    • What is Pompe Disease?
    • Symptoms
    • Diagnosis
    • Treatments
    • Recommended Links
  • Clinical Trials
  • Air Travel
  • Donations & Fund Raising
  • Glossary
  • Accessible NZ
  • NZPN Membership
  • NZPN Conference 2018 Summary
  • PHARMAC & Govt
    • Party stances on funding Rare Diseases
  • Contact us

Welcome!

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 11 people diagnosed with Pompe Disease in NZ that we know of.

NZPN is incorporated under the Charitable Trusts Act 1957
and is a registered charity
- Registration Number CC54486
​


Important information regarding questions raised about the COVID vaccines for us Pompe people.
IF you are interested in getting gene therapy in future, you should steer away from the vaccines that use AAV. Stick to the ones that use mRNA.

Here are a couple of links explaining the difference...

https://masseyeandear.org/covid-19/vaccine
https://www.cdc.gov/.../vacc.../different-vaccines/mrna.html

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Site created: 7th November 2010
Site updated:
 30th December 2020
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  • Home
  • Our People
    • Our Patients >
      • Freda
      • Allyson
      • Christine
      • Dean
      • Samantha
      • Yakuta
      • Laurie
  • News and views
    • Press Releases
    • Personal Media Stories
    • Blog
    • Allyson's Florida Blog
    • Success Stories >
      • Maryze
      • Brad
      • Monique
      • Ben
      • Brian
  • About Pompe
    • What is Pompe Disease?
    • Symptoms
    • Diagnosis
    • Treatments
    • Recommended Links
  • Clinical Trials
  • Air Travel
  • Donations & Fund Raising
  • Glossary
  • Accessible NZ
  • NZPN Membership
  • NZPN Conference 2018 Summary
  • PHARMAC & Govt
    • Party stances on funding Rare Diseases
  • Contact us