“I remember it being very overwhelming in the beginning. I struggled to accept that my tiny baby Amber had this life-limiting, progressive illness without a cure,” Claire (pictured above) explains.
Amber (pictured above, right), now aged 13, is one of the 530 New Zealanders currently living with cystic fibrosis, a genetic condition that causes a build-up of thick sticky mucus in the lungs, digestive system and other organs, causing a wide range of challenging symptoms affecting the entire body.
Cystic Fibrosis NZ is the only charity in New Zealand dedicated to supporting and improving the quality of life for people with CF and their families. Established in 1968 as a volunteer support group for parents with a newly diagnosed child, we dedicate ourselves to shaping a brighter future for everyone with cystic fibrosis.
Cystic fibrosis (CF) is a progressive, genetic condition that limits the ability to breathe over time. There are now over 540 Kiwis with CF, with 12 babies born in 2019. CF is a multi-organ disorder, causing issues with the lungs, digestion, sinuses, blood sugar levels, liver, and many other parts of the body.
At present there is no cure for CF, but scientists are constantly working on new therapies and drugs that will continue to prolong life and hopefully lead to a cure. In the meantime, we remain dedicated to supporting and improving quality of life for people with CF and their families by providing information, support, advocacy, and through funding research.
We receive less than 4% government funding and rely on the generosity of everyday New Zealanders to meet the ongoing needs of our community.
With their help (and yours!) we can offer personalised support, whether it is emotional guidance, practical advice, or financial assistance, to individuals and their families throughout their journey.
Our team of CF Social Workers visit and support families in their homes and within medical settings, we facilitate parent to parent support, provide vouchers and allowances during hospitalisations, welfare assistance during hardship, offset the costs of mobile medical equipment, assistance towards organ transplant costs and, when necessary, end of life support.
We also contribute to promising CF research projects and advocate on behalf of the community for better access to treatment and care.
The diverse members of the Cystic Fibrosis New Zealand team combine their expertise to support the CF community and carry out the strategic plan, goals and vision set out by the Board.
The CFNZ team consists of the chief executive, core administrative, communications and fundraising team based in Auckland, with four social workers who each provide personalised support to people with CF and their families in the community.
Meet the members of our Board, who combine their experience and expertise to improve the lives of people with CF in New Zealand.
Our Board oversees our strategic direction and monitors how we deliver our objectives. The diverse members of the Board combine their experiences and expertise to guide the Chief Executive, who works with the Cystic Fibrosis New Zealand staff to achieve the charity’s vision.
The CFNZ Clinical Advisory Panel (CAP) provide CFNZ with timely, honest and impartial advice related to the clinical aspects of the activities of CFNZ.
Members of the CAP represent the multi-disciplinary clinical team model of care and are representative of clinical services for cystic fibrosis in New Zealand.
Members of the CAP communicate on issues related to cystic fibrosis and meet regularly throughout the year.
The roles and responsibilities of the CAP are to:
The CAP doesn’t comment on individual patient care.
For more information about the CAP, please contact admin@cfnz.org.nz
Each year we publish our annual report to share how we're making a difference to people with CF.
View annual reportsFind out our position on issues that affect our community, including infection prevention and control for people with CF and funding for vital equipment.
Read our position statements
In 2018 Cystic Fibrosis NZ turned 50. Take a look at some of the milestones in the vision to see lives unlimited by cystic fibrosis, the impact we’ve made, and how our understanding of the condition has changed over the last 50 years.
View the timeline