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.
Community
Building a stronger Pompe community
Education
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