Find support, or help research
People near you who know what living with Pompe disease is like, and ways you can help find better treatments.
Support groups in New Zealand
- New Zealand Pompe NetworkNew Zealand Pompe Network: patient organisation in New Zealand supporting people with Pompe disease; member of IPA.All of New Zealand
- Rare Disorders NZRare Disorders NZ: national rare disease alliance in New Zealand supporting people with rare diseases; member of RDI.All of New Zealand
Contact details come from each group's own page and are checked every 3 months.
Help research
You do not need to join a trial to help. Below are the programmes we found in New Zealand and how to reach them. You contact them yourself: Frontlight does not collect or pass on your details.
Give blood or tissue for researchResearchers use stored samples to find what causes Pompe disease.
Share your health dataA registry collects health data, without your name, so research teams can study many people at once.
Take part as a healthy volunteerStudies need people without Pompe disease to compare with. Family and friends can help.