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

Some of our patients

Allyson
Freda
Dean
Samantha
Christine
Yakuta


Founding Members of NZPN

Picture
The very first photo of all 4 of the founding members of NZPN in Wellington - 8th of June 2011



​Friends Lost

Laurie
Laurie Hill was the first Vice President of NZPN.  He was a staunch supporter of getting Pharmac to fund Myozyme for Pompe sufferers in New Zealand.

Sadly, Laurie passed away on the 30th of December 2016 while awaiting the decision from Pharmac on whether or not to fund Myozyme for adult onset Pompe.  Just a few weeks later, it was declined yet again.  Laurie was just 54 years old.

Rest in Peace Laurie - you will not be forgotten.
1962 - 2016


Powered by Create your own unique website with customizable templates.
  • 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