Endometriosis New Zealand

What Endometriosis New Zealand does

Endometriosis New Zealand is Aotearoa's national endometriosis organisation, founded in 1985 by Deborah Bush following her own diagnosis and now operating as a registered charity headquartered in Christchurch with approximately 10 employees. The organisation serves an estimated 120,000 New Zealanders living with endometriosis, along with their families, healthcare providers, employers, and policymakers, delivering a comprehensive suite of services spanning support, advocacy, research, information, education, and awareness. Its core offerings include evidence-based educational content on endometriosis stages, causes, symptoms, diagnosis, and treatment (surgical and medical), self-management resources covering coping, nutrition, supplements, exercise, complementary therapies, and sleep, a human-mediated 'Ask an Expert' service, a 'My Story' lived-experience forum, an annual 120 Challenge fundraising and awareness campaign, and a free four-week online Endometriosis & Exercise Series. The organisation also runs the Endometriosis in the Workplace campaign targeting the 65-75% of the NZ$22+ billion annual economic burden that comes from workplace productivity losses.

The business model is a charity donation-driven model with three identified revenue streams: donations and fundraising (anchored by the annual 120 Challenge), membership and joining (described as a recurring subscription-style mechanism for receiving updates and resources), and corporate sponsorships. No pricing is published and resources are provided free to end-users. The go-to-market is community-led, distributed through a proprietary website (nzendo.org.nz), active social media on Facebook, Twitter/X, Instagram, and LinkedIn, email newsletters, events and webinars, healthcare provider referrals, and corporate workplace programs. The technology stack is non-proprietary and the organisation does not develop software products; its principal assets are brand authority, community reach, and a growing national research dataset assembled through partnerships with the University of Canterbury (6,500+ survey responses, 1,650+ patient panel) and the Medical Research Institute of New Zealand.

Strategically, the organisation is repositioning from a traditional support-and-awareness charity into a national research and policy-coordination body, evidenced by its multi-year University of Canterbury research partnership, its role in the MRINZ-led cost-of-illness study, its advocacy for a National Endometriosis Action Plan, and its push for Pharmac funding of pharmaceutical treatments including Visanne and Ryeqo. It is governed by a Board including a Board Chair, Future Director, and lived-experience board members, and is led by Chief Executive Tanya Cooke. Founded by Deborah Bush MNZM, QSM, who received international recognition as Most Pioneering Women's Health Expert at Global Health & Pharma's 2025 Women's Health Awards, the organisation operates exclusively in New Zealand with no disclosed international expansion.

Name

Endometriosis New Zealand

Legal name

Endometriosis New Zealand

Website

https://nzendo.org.nz

Company type

Private

Founded year

1985

Operating status

Operating

Headcount range

1–10 employees

Short description

Endometriosis New Zealand is Aotearoa's national endometriosis charity, providing support, advocacy, research, education, and awareness for the 120,000 New Zealanders living with the condition, funded through donations, fundraising, memberships, and corporate sponsorships.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Health Non-Profit Services

NAICS

Voluntary Health Organizations (813212), Individual and Family Services (6241), Social Assistance (624)

SIC

Services-Health Services (8000), Services-Social Services (8300)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industry

Community Health, Prevention & Health Education (BPAGACAC)

Keywords

• Endometriosis support services
• Patient advocacy charity
• Health education resources
• Chronic disease awareness
• Women's health nonprofit

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations and Fundraising: Endometriosis New Zealand relies on donations and fundraising activities to support its operations. The annual 120 Challenge is a key fundraising initiative where participants complete 120-themed activities to raise funds for education, support, and advocacy programs.
2. Membership and Joining: The organization offers membership opportunities for individuals to support the cause and receive regular updates on research findings, news, and resources.
3. Corporate Sponsorships: The organization has corporate sponsors who support endometriosis awareness and care initiatives.

Go-to-market motion1 record

Distribution channels5 records

Marketing channels8 records

Core offering

Endometriosis New Zealand is Aotearoa's national charitable organization providing free evidence-based information, support, advocacy, education, and research services for people affected by endometriosis. The organization delivers community-led programs including patient education content, self-management resources, emotional support services, an expert Q&A platform, the annual 120 Challenge fundraising campaign, and collaborative research initiatives.

Product overview

Endometriosis New Zealand is Aotearoa's national endometriosis organisation offering a comprehensive suite of support, advocacy, research, information, education and awareness services. The organization provides evidence-based educational content covering endometriosis stages, causes, symptoms, diagnosis, and treatment options (surgical and medical), alongside self-management resources including coping strategies, nutrition guidance, supplements, exercise recommendations, complementary therapies, and sleep support. Core services include practical and emotional support, national advocacy for a National Endometriosis Action Plan, education programs for public and health professionals, collaborative research initiatives with universities, free resources, an expert Q&A service, events, and a personal story forum. The organization runs the annual 120 Challenge awareness and fundraising campaign representing the estimated 120,000 New Zealanders living with endometriosis.

Differentiator

Problem solved

Functional benefit

Products and services

• Support Services Practical and emotional support services to help individuals living with endometriosis take control of their condition and feel heard. This is a core service for those affected by endometriosis in New Zealand.
• National Advocacy National advocacy efforts including calls for a National Endometriosis Action Plan and adoption of updated clinical guidelines. Targeted at government, policymakers, and healthcare system leaders.
• Education Programs Educational initiatives for the public, schools, workplaces, and health professionals to improve awareness and understanding of endometriosis. Designed for diverse audiences across New Zealand.
• Research Initiatives Collaborative research projects with universities, including the Barriers and Facilitators of Endometriosis Care in Aotearoa New Zealand study with the University of Canterbury. The research has collected over 6,500 survey responses and 1,650+ patients signed up for future research participation.
• Free Resources Free downloadable resources, fact sheets, workplace policies, and practical guides for patients and employers. Available to anyone in New Zealand.
• Ask an Expert Expert Q&A service connecting individuals with specialists to answer questions about endometriosis. Free online platform for people seeking specialist guidance.
• 120 Challenge Campaign Annual national awareness and fundraising initiative representing the estimated 120,000 New Zealanders living with endometriosis. Participants undertake 120-themed activities to raise funds for the organization's education, support, and advocacy programs.
• Endometriosis & Exercise Series Free four-week online exercise program designed to provide practical support and guidance for those living with endometriosis. Available to individuals across New Zealand.

Quantifiable outcome

• 47% of endometriosis patients had never heard of the condition when symptoms began, highlighting the critical need for awareness initiatives
• +1 more outcomes

Named customers1 record

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Five partnerships are on record, tiered core and minor.

• University of CanterburycoreStrategic or Co-development Partner · 1 January 2025Endometriosis New Zealand has partnered with the University of Canterbury on a major research project titled 'Barriers and Facilitators of Endometriosis Care in Aotearoa New Zealand'. The project aims to build a clearer picture of how endometriosis impacts people in New Zealand, capturing lived experiences through national survey series. The research investigates awareness, diagnosis, treatment, work, education, finances and healthcare system interactions.
• Medical Research Institute of New Zealand (MRINZ)coreStrategic or Co-development Partner · 1 January 2025Partnership on cost-of-illness research for endometriosis and chronic pelvic pain in New Zealand. Led by Dr Jordan Tewhaiti-Smith, the study revealed the multi-billion-dollar annual economic impact of endometriosis.
• RANZCOG (Royal Australian and New Zealand College of Obstetricians and Gynaecologists)coreStrategic or Co-development Partner · 1 January 2025Endometriosis New Zealand advocates for adoption of the RANZCOG Australian Living Evidence Guideline: Endometriosis in New Zealand. The organization participates in joint statements on best practice approaches to endometriosis management.
• Gedeon RichterminorOthers · 1 January 2025Endometriosis New Zealand worked with the pharmaceutical company to make Visanne available in the New Zealand market and advocates for Pharmac funding of Visanne and Ryeqo treatments.
• Endo Warriors AotearoaminorOthers · 1 January 2025Endo Warriors Aotearoa provided funding support for University of Otago research on medicinal cannabis for endometriosis pain management.

Scale indicators7 records

Recent moves6 records

Expansion highlights6 records

Emerging players

• Pelvic Pain Foundation of Australia: Australian organization addressing persistent pelvic pain including endometriosis. Comparable as a thematic peer working on pelvic pain awareness, education for clinicians, and patient resources, though narrower in condition scope.

Others

• Medical Research Institute of New Zealand (MRINZ): Wellington-based medical research institute that partnered on the 2025 cost-of-illness study showing the ~$22.6B annual burden. Closely tied to Endometriosis New Zealand's research output rather than a competing entity.
• RANZCOG (Royal Australian and New Zealand College of Obstetricians and Gynaecologists): Trans-Tasman clinical college that produces the Australian Living Evidence Guideline for Endometriosis that Endometriosis New Zealand advocates adopting. A clinical/standards partner rather than a competing charity.

Direct peers

• Endometriosis UK: UK-based national charity providing information, support, and advocacy for people with endometriosis. Most directly comparable peer given its national remit, awareness campaigns, helpline services, and policy advocacy role mirroring Endometriosis New Zealand's structure.
• Women's Health Action (New Zealand): NZ-based women's health charity covering reproductive health, contraception, and menopause. Comparable as a domestic women's health advocacy organization with shared audience, policy advocacy capability, and donor base.
• Endometriosis Foundation of America: US-based nonprofit focused on endometriosis awareness, education, research, and advocacy. Comparable as a national-level disease-specific advocacy charity, though with a larger footprint and stronger US clinical research portfolio.
• Family Planning New Zealand: NZ non-profit providing sexual and reproductive health information, clinical services, and education. Comparable as a domestic women's reproductive health organization with overlapping patient segments and policy engagement, though broader in scope than endometriosis.

Regional players

• QENDO (Australia): Australian patient advocacy organization for endometriosis, adenomyosis, PCOS, and pelvic pain. Operates across Australia with similar peer-support, education, and advocacy offerings; comparable as a regional peer addressing overlapping women's health conditions.
• Endometriosis Australia: Australia's national endometriosis awareness and support organization. Closely comparable in mission, services, and clinical guideline alignment via RANZCOG, but operates across Australia rather than New Zealand.
• EndoActive (Australia): Australian endometriosis and pelvic pain awareness and advocacy organization. Similar grassroots, community-led model, with comparable emphasis on patient stories, awareness campaigns, and clinical guideline adoption.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xx.com/NZEndo
• YouTubeyoutube.com/channel/UCh9X6Q69M70tynLYuE4JBUg
• Facebookfacebook.com/nzendo
• LinkedInlinkedin.com/company/endometriosisnz
• Instagraminstagram.com/endometriosisnewzealand

Revenue estimate

Valuation estimate

Number of profiles

Profiles5 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 Endometriosis New Zealand