New Zealand Pompe Network
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>
Freda
Allyson
Christine
Dean
Samantha
Yakuta
Laurie
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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 to the New Zealand Pompe Network
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
Site created:
7th November 2010
Site updated:
30th December 2020
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