About us

The New Zealand Pompe Network was set up in 2010 when there were just 4 patients diagnosed with Pompe.

We felt that with so many rare diseases, Pompe got lost amongst the crowd, so we decided to set up our own group.

NZPN achieved charitable status in 2011.

Our mission is to provide information and support to our New Zealand Pompe community.

As of December 2022, NZ has 15 patients.

Our Programs

Please contact us anytime about any of our programs.


Building a stronger Pompe community


Providing information to affected families

Advocate for Patients

We continue to push for treatment funding for patients

Physician Outreach

Raising awareness of Pompe disease

International Connections

We’ve worked hard to build connections with experts and advocates

New Potential Therapies

We use our connections to stay informed