Cystic Fibrosis NZ

What Cystic Fibrosis NZ does

Cystic Fibrosis NZ (CFNZ), formally the Cystic Fibrosis Association of New Zealand, is a registered charitable organization (Charities Commission CC10274) founded in 1968 as a parent support group and now operating with a 13-person staff and a Board of Directors. It serves the approximately 540+ people in New Zealand living with cystic fibrosis, plus their families and whānau, through three core programs: personalized support (field workers and 12 regional branches run by CF families), advocacy for medicine and equipment access, and research funding via a national research strategy co-developed with Cure Kids.

Its core products and underlying infrastructure are predominantly non-technological and service-oriented. The portfolio includes the Port CF national data registry (established 2012, used for advocacy benchmarking against UK and Australian CF registries), the BreatheHero tablet-based physiotherapy compliance game co-developed with academic partners, the CF News magazine and CF Panui newsletter, free downloadable guides and clinical resources, the CFNZ online shop (Chocky Fish chocolate, merchandise, collection buckets), and the Digital Village community platform. The technology footprint is functional rather than proprietary — the "moat" is the data registry and the curated community ecosystem rather than software IP.

The business model is donation- and event-driven. Revenue streams include individual donations (one-time and monthly), fundraising events (Chocky Fish campaign, Street Appeal, CF Awareness Month in May, Sweatember, Auckland Marathon participation, fashion fundraisers, Christmas Festival), merchandise sales via shop.cfnz.org.nz, legacy gifts in wills, corporate sponsorship/partnerships, and grant funding for research (e.g., New Zealand Lotteries Board, Callaghan Innovation, Vertex-adjacent advocacy outcomes). All direct services to people with CF — field worker support, information resources, financial assistance, advocacy — are provided free of charge. No revenue figure is publicly disclosed. Key strategic partners include PHARMAC, Medsafe, Vertex Pharmaceuticals, Cure Kids, the University of Auckland / Starship Children's Hospital, the University of Otago, Callaghan Innovation, Rare Disorders NZ, and peer CF organizations in Australia, the UK, the US, and Europe.

Name

Cystic Fibrosis NZ

Legal name

Cystic Fibrosis Association of New Zealand

Website

https://cfnz.org.nz

Company type

Private

Founded year

1968

Operating status

Operating

Headcount range

11–50 employees

Ownership category

akta.pro rank

Product category

Patient Advocacy & Support Services

NAICS

Services for the Elderly and Persons with Disabilities (62412), Individual and Family Services (6241)

SIC

Services-Home Health Care Services (8082)

akta.pro primary industry

Cystic Fibrosis & Bronchiectasis Care (HLAKANAK)

Keywords

• Cystic fibrosis support
• Patient advocacy services
• Charitable health services
• Disease research funding
• Community health support

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Donations: Cystic Fibrosis NZ receives charitable donations from individuals who support the CF community in New Zealand. The organization runs donation campaigns including monthly giving programs and one-time donations.
2. Fundraising Activities: The organization raises funds through various events and campaigns including CF Month, Street Appeals, the Chocky Fish fundraising campaign, fashion fundraisers, and participation events like the Auckland Marathon and Sweatember.
3. Merchandise Sales: CFNZ operates an online shop selling merchandise including Chocky Fish chocolate fish, t-shirts, stickers, posters, and collection buckets to support fundraising efforts.
4. Legacy Gifts: The organization accepts gifts in wills (legacy gifts) as a way for supporters to leave lasting support for the CF community.

Distribution channels5 records

Marketing channels9 records

Core offering

Cystic Fibrosis NZ (CFNZ) provides personalized emotional and practical support, advocacy for access to CF medicines, and research funding for people with cystic fibrosis and their families in New Zealand. The organization delivers field worker home visits, operates 12 regional branches, maintains the Port CF national data registry, and runs awareness and fundraising programs including the Chocky Fish campaign, Street Appeal, and Sweatember.

Product overview

Cystic Fibrosis NZ (CFNZ) is a charitable organisation providing a portfolio of support services for people with cystic fibrosis and their families in New Zealand. The core offerings include the Port CF Data Registry (a national CF patient data registry), personal and family support services with field workers, advocacy programs for access to medicines, and research funding initiatives. CFNZ also operates various fundraising programs including Chocky Fish campaigns and events, distributes information resources through newsletters (CF News, Panui), guides, and fact sheets, and funds research projects such as BreatheHero™ physiotherapy compliance tools. The organisation connects with the CF community through 12 regional branches, an online shop, and various digital platforms.

Differentiator

Problem solved

Functional benefit

Products and services

• Port CF Data Registry A New Zealand data registry owned by CFNZ that uses anonymous patient data collected from people with CF to analyse trends in CF care, with reports comparable to CF registries in the UK and Australia.
• Personal & Family Support Personalised emotional and practical support for individuals with CF and their families and whānau, delivered through field worker services and regional branch support across New Zealand.
• CFNZ Advocacy Program Advocacy program campaigning for access to CF medicines (Trikafta, Kalydeco, Alyftrek), improved welfare assistance, and healthcare equality for New Zealanders with cystic fibrosis.
• CFNZ Research Program Funding programme for promising NZ-based cystic fibrosis research studies, developed jointly with Cure Kids, including antibiotic resistance research and the BreatheHero physiotherapy compliance tool.
• CFNZ Information Resources Free information resources including the CF News magazine, monthly CF Panui newsletter, guides, fact sheets, clinical guidelines, parenting resources, and international CF organisation links.
• Chocky Fish Fundraising Campaign Annual chocolate fish fundraising campaign where individuals purchase boxes of 50 individually wrapped chocolate fish to sell for minimum gold coin donations supporting Kiwis living with cystic fibrosis.
• CFNZ Events & Initiatives Fundraising and awareness events including CF Awareness Month, Street Appeal, SWEATEMBER, Auckland Marathon, Christmas Festival at Wellington Airport, and Fashion Fundraiser pop-ups.
• CFNZ Fundraising Platform Online fundraising tools including Givealittle integration, merchandise (buckets, stickers, t-shirts, posters), and an online toolkit for community fundraisers.

Quantifiable outcome

• Successfully advocated for PHARMAC funding of Trikafta, Kalydeco, and Alyftrek for eligible NZ patients
• +1 more outcomes

Segments1 record

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Eleven partnerships are on record, tiered core and minor.

• Cure KidscoreStrategic or Co-development PartnerCFNZ and Cure Kids jointly fund research projects including BreatheHero (a tablet-based physiotherapy game for children) and antibiotic resistance research targeting Pseudomonas aeruginosa bacteria in CF patients.
• Vertex PharmaceuticalscoreOthersVertex Pharmaceuticals manufactures Trikafta, Kalydeco, and Alyftrek - CFTR modulator therapies. CFNZ has conducted sustained advocacy resulting in PHARMAC funding agreements for these medicines in New Zealand.
• University of Auckland / Starship Children's HospitalcoreStrategic or Co-development PartnerAssociate Professor Cass Byrnes leads CF clinical care research at Starship Children's Hospital and the University of Auckland, collaborating on projects including BreatheHero physiotherapy compliance research.
• University of OtagocoreStrategic or Co-development PartnerProfessor Iain Lamont's research team at Otago University studies antibiotic resistance in Pseudomonas aeruginosa bacteria affecting people with CF.
• PHARMACcoreOthersPHARMAC is the New Zealand government agency that funds medicines. CFNZ has advocated successfully for funding of Trikafta, Kalydeco, and Alyftrek for eligible New Zealanders with CF.
• Cystic Fibrosis AustraliaminorStrategic or Co-development PartnerInternational CF organization providing support and services to people with CF in Australia, complementing their work with research and quality improvement programs.
• Cystic Fibrosis Trust (UK)minorStrategic or Co-development PartnerUK charity working towards a brighter future for people with CF through research, improved standards of care, and family support.
• European Cystic Fibrosis Society (ECFS)minorStrategic or Co-development PartnerInternational forum on all aspects of CF promoting high quality research and education for better clinical care.
• Cystic Fibrosis Foundation (USA)minorStrategic or Co-development PartnerUS foundation supporting research programs to discover and develop new CF therapies with an active drug development pipeline.
• Rare Disorders NZminorStrategic or Co-development PartnerPartnership with Rare Disorders NZ as part of advocacy efforts to improve access to medicines and healthcare for people with rare conditions including CF.
• New Zealand Lotteries BoardminorOthersFunder of CF research projects including antibiotic resistance research conducted by Professor Lamont's team at Otago University.

Scale indicators4 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Cystic Fibrosis Canada: Cystic Fibrosis Canada is the closest North American peer national CF charity, funding research and advocating for access to CFTR modulator therapies. Operates a national patient registry similar to Port CF.
• Cystic Fibrosis Australia: Cystic Fibrosis Australia is the closest international peer — a national CF patient advocacy and support charity operating across Australia with research funding, advocacy to the Pharmaceutical Benefits Scheme, and clinical registry work, mirroring CFNZ's service portfolio with regional branches and information resources.
• Cure Kids: Cure Kids is CFNZ's core research co-funder and partner on BreatheHero™ and Pseudomonas research. Functions as a peer NZ child-health research charity that jointly funds CF studies, making it a directly comparable research-grant counterpart.
• European Cystic Fibrosis Society (ECFS): ECFS is a Europe-wide CF research and clinical-care society explicitly identified as an international partner of CFNZ. They share a clinical best-practice, registry, and research dissemination mandate aligned with CFNZ's Port CF and advocacy goals.
• Cystic Fibrosis Trust (UK): The UK Cystic Fibrosis Trust is a peer national CF charity providing research funding, family support, and standards-of-care advocacy. CFNZ explicitly cites it as a comparable international partner organization.
• Rare Disorders NZ: Rare Disorders NZ is CFNZ's named domestic advocacy coalition partner for rare-disease medicine access. Operates as a peer rare-disease umbrella charity working alongside CFNZ on PHARMAC lobbying and healthcare-equality campaigns.

Emerging players

• Cystic Fibrosis NZ — research/peer CF registries (UK CF Registry, Australian CF Data Registry): National CF patient registries that Port CF explicitly benchmarks against. They serve as reference peers for CFNZ's data-registry product offering, used for cross-country comparison and research collaboration.

Broad incumbents

• Cystic Fibrosis Foundation (USA): The US Cystic Fibrosis Foundation is the global anchor CF charity, funding a major drug development pipeline and patient registry. CFNZ is explicitly listed as a collaborating partner in CFNZ's partnership materials, indicating direct peer network alignment.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Facebookfacebook.com/CysticFibrosisNZ
• LinkedInlinkedin.com/company/cystic-fibrosis-nz

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Cystic Fibrosis NZ