Cluster Headache Aotearoa NZ is now an incorporated charitable trust board. The trust was incorporated on 12 August 2026, and our first trustee meeting was held on 16 August 2026. Our founding trustees are Craig Stewart, Leanne Stewart and Gillian Francis.
The public resources are live, but the organisation is still young. At publication, CHNZ was incorporated, charity registration was still pending, and bank onboarding and ordinary operating setup were still moving through the practical steps that any new trust has to get right. Update, 14 September 2026: Charities Services has approved registration. Cluster Headache Aotearoa New Zealand Trust Board is now registered charity CC65148.
What the Trust is for
The Trust exists to give people with cluster headache, their supporters and clinicians a clear New Zealand starting point. It explains the condition, points people toward urgent help when they need it, and collects treatment and access information in one place.
We are patient-founded. That is a strength, but it also means we have to be disciplined about medical information. Some pages have completed clinical review, and other pages are still marked as awaiting review. We show that status page by page so readers can see what has and has not been checked.
Who is helping
Alongside the trustees, CHNZ is supported by people who understand cluster headache from lived experience, peer support, clinical practice, research and advocacy. Some clinicians have generously offered time to review CHNZ health information for accuracy, clarity and safety. That helps us improve the Trust's resources; it is not an endorsement of every CHNZ position or publication.
What we are focused on now
The largest current workstream is oxygen access. Health NZ has confirmed that funded high-flow oxygen for cluster headache exists in New Zealand, but the practical pathway is still uneven and the national service specification still needs clearer wording. We are also building peer support routes, improving information for GPs, and gathering better records on what patients are actually being told around the country.
CHNZ will stay useful only if the work remains practical. That means careful information, respectful advocacy, transparent corrections, and a willingness to do the unglamorous work: checking sources, writing to agencies, chasing unclear answers and turning what we learn into something patients and clinicians can use.