Rare Disorders Nz
Rare Disorders New Zealand (RDNZ) is a Wellington-based registered charity and the collective voice for approximately 300,000 New Zealanders living with a rare disorder, representing over 150 disorder-specific support groups through advocacy, support services, parliamentary engagement, and a national rare disorders research network.
- Company typePrivate
- Founded2017
- HeadquartersWellington, New Zealand
- Headcount1–10
- GTM typeB2C
- OfferingServices
What Rare Disorders Nz does
Rare Disorders New Zealand (RDNZ), founded in 2017 (operating since at least 2017 as NZORD, rebranded 2019), is a registered New Zealand charity headquartered in Wellington that serves as the collective voice for approximately 300,000 New Zealanders living with a rare disorder and their whānau (families). The organization operates through a federation model, providing services and advocacy on behalf of more than 150 disorder-specific support groups, and delivers a portfolio that includes a support group directory, patient resource hub, parent and caregiver guides, navigation services for health and disability systems, mental health resources, and a Round Table of Companies forum established in 2019 for pharma engagement. Underlying technology is minimal — RDNZ is not a technology company but a content, community, and policy platform delivered through a website (raredisorders.org.nz), newsletters, podcasts, Facebook communities (including a Māori-specific group), and in-person events such as Rare Disorders Month.
RDNZ's strategic reach has expanded materially since 2023 through three foundational moves: delivery of New Zealand's first Rare Disorders Strategy in 2023, establishment of the Cross-Party Parliamentary Group on Rare and Undiagnosed Disorders (14 MPs) in March 2025, and recognition as the 19th ERDERA National Mirror Group — the first Southern Hemisphere non-European country — in late 2025. In late 2024, RDNZ co-launched the Rare Disorders Research Network (RDRN) with Victoria University of Wellington, growing to 50+ research members across VUW, University of Otago, and University of Auckland's Liggins Institute. A Māori Advisory Group is being established to ground the organization in Te Tiriti o Waitangi principles.
The business model is charitable rather than commercial: services are provided free of charge to patients and families, and revenue derives from donations (prominent donate button on the website), grants, fundraising events including the annual Rare Beer Challenge, and pharmaceutical industry engagement through the Round Table of Companies. RDNZ does not have investors or shareholders and is governed by a Board of Trustees chaired by Ariane Tuapola, with Chief Executive Chris Higgins also chairing the NZ ERDERA National Mirror Group. Revenue, headcount, and audited financials are not publicly disclosed, consistent with a small national charity footprint.
Rare Disorders Nz firmographics
Firmographics- Name
- Rare Disorders Nz
- Legal name
- Rare Disorders New Zealand
- Website
- https://raredisorders.org.nz
- Company type
- Private
- Founded year
- 2017
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- Rare Disorders New Zealand (RDNZ) is a Wellington-based registered charity and the collective voice for approximately 300,000 New Zealanders living with a rare disorder, representing over 150 disorder-specific support groups through advocacy, support services, parliamentary engagement, and a national rare disorders research network.
- Ownership category
- akta.pro rank
Rare Disorders Nz industry classification
Industry- Product category
- Rare Disease Advocacy Services
- NAICS
- Individual and Family Services (6241), Other Similar Organizations (except Business, Professional, Labor, and Political Organizations) (813990), Human Rights Organizations (813311)
- SIC
- Services-Social Services (8300), Services-Membership Organizations (8600), Services-Health Services (8000)
- akta.pro primary industry
- Rare Disease & Special Needs Support Organizations (BPAGACAM)
Keywords
Where Rare Disorders Nz is headquartered
LocationHeadquarters
- HQ city
- Wellington
- HQ country
- New Zealand
- HQ region
- Oceania
Offices1 record
Markets served
Rare Disorders Nz business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Others
Revenue model
- Donations and Charitable Funding: Rare Disorders NZ operates as a registered charity and relies on donations from the public (evidenced by prominent donate buttons on their website), grants, and potentially government funding to support their advocacy and support services for the rare disorders community.
Go-to-market motion1 record
Distribution channels3 records
Marketing channels7 records
Rare Disorders Nz product offering
Product offeringCore offering
Rare Disorders NZ is a registered charity that serves as the collective voice for the approximately 300,000 New Zealanders living with a rare disorder. The organization coordinates a network of 150+ disorder-specific support groups, delivers patient and caregiver resources, advocates for policy change through parliamentary channels, and operates the national Rare Disorders Research Network connecting researchers across institutions.
Product overview
Rare Disorders NZ is a national advocacy charity, not a product company. The organization serves as the collective voice for approximately 300,000 New Zealanders living with rare disorders. Its offerings consist of support services (support group directory, patient resources, mental health support, self-advocacy resources), advocacy initiatives (the Cross-Party MP Group, Māori Advisory Group, Rare Disorders Strategy), research infrastructure (Rare Disorders Research Network connecting over 50 researchers), financial support guidance (disability funding, Work and Income resources, other financial support), and information resources (genetic testing information, transition to independent living guides, parent and caregiver guide). These services work together to improve healthcare and wellbeing for people with rare health conditions through support, advocacy, and research coordination.
Differentiator
Problem solved
Functional benefit
Products and services
- Support Group Directory A searchable directory of over 150 disorder-specific support groups connecting patients and families with rare disorders in New Zealand.
- Rare Disorders Research Network (RDRN)
Quantifiable outcome
- First-ever Rare Disorders Strategy for New Zealand achieved through advocacy efforts
- +2 more outcomes
Companies that use Rare Disorders Nz
Customer profileSegments4 records
Ideal customer profiles3 records
Rare Disorders Nz technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Rare Disorders Nz partnerships and signals
Strategic signalPartnerships
Seven partnerships are on record, tiered core, flagship and major.
- Victoria University of Wellington (School of Nursing, Midwifery and Health Practice)coreJoint collaboration establishing New Zealand's Rare Disorders Research Network. Professor Karen McBride-Henry and Dr Tara Officer received HRC Health Delivery Research Activation Grant for rare disorders research. The network is co-chaired by RDNZ Chief Executive Chris Higgins and Associate Professor Phillip Wilcox (University of Otago).
- University of OtagocoreLeads rare disorders research through Associate Professor Phillip Wilcox (Māori Variome project, He Kākano) and Professor Louise Bicknell (ERDERA ambassador). Multiple research leadership group members from University of Otago including Stephanie Hughes (RARITY initiative) and Louise Bicknell.
- European Rare Diseases Research Alliance (ERDERA)flagshipNZ became the 19th National Mirror Group and first Southern Hemisphere non-European country recognized by ERDERA in late 2025. ERDERA has 185 organisations across 37 countries with €385 million budget. NZ NMG connects New Zealand researchers with international rare disease networks and provides potential gateway to Horizon Europe research programme.
- University of Auckland (Liggins Institute)coreProfessor Justin O'Sullivan leads work on fast-tracking rare disease from diagnosis to custom therapies. Research on acute care genetics, trio sequencing, newborn genetic testing projects. Partnership with Māori Research Advisory Group.
- Round Table of Companies (Pharmaceutical Companies)coreEstablished 2019. Forum of pharmaceutical companies with interest in orphan drugs and therapeutic interventions for rare disorders in New Zealand. Holds two meetings annually. Provides transparent working relationships between industry and patient community while maintaining RDNZ independence. Current members include multiple pharmaceutical company logos (specific companies not named in text).
- Australian National Mirror Group (via Perth Children's Hospital Rare Care Centre)majorCollaboration through Catalyst-funded NMG/Australian partnership project. Professor Gareth Baynam leads Australian efforts. Cross-sector rare disorders research framework sharing. Plans for joint meetings and knowledge sharing on rare disease models of care.
- Cross-Party Parliamentary Group on Rare and Undiagnosed Disorders (CPGRD)flagshipFormally established 12 March 2025 with support from Associate Minister of Health Hon. David Seymour. 14 MPs from multiple parties. National MP Hamish Campbell as Chair, Labour MP Hon. Dr. Ayesha Verrall as Deputy Chair. RDNZ provides secretariat support. Quarterly meetings.
Scale indicators5 records
Recent moves5 records
Expansion highlights6 records
Rare Disorders Nz competitors and assessment
Company assessmentDirect peers
- EURORDIS - Rare Diseases Europe: European umbrella for rare disease patient organisations; directly comparable as a federation of national rare disease alliances driving cross-border policy, research, and advocacy—mirroring RDNZ's role at a smaller scale within NZ and recently joining ERDERA.
- Genetic Alliance UK: UK umbrella for genetic and rare condition support groups; directly comparable structure—membership-based federation of condition-specific groups providing advocacy, information, and policy influence.
- Canadian Organization for Rare Disorders (CORD): Canada's national rare disease patient alliance; comparable as a national umbrella advocating for a national rare disease strategy, drug access reform, and research funding, with member support groups analogous to RDNZ's collective.
- Rare Voices Australia: Australia's national rare disease advocacy body; operates the same collective-voice model serving patients across disease areas, drives national rare disease policy, and partners with RDNZ via the joint Catalyst-funded NMG initiative.
Broad incumbents
- National Organization for Rare Disorders (NORD): Largest US rare disease advocacy organisation; directly comparable as a national collective voice for rare disease patients and a major policy/advocacy umbrella, with a much larger scale and portfolio including research grants and patient registries.
Others
- Orphanet: Global reference portal for rare diseases and orphan drugs providing disease classification, prevalence data, and expert resources; adjacent infrastructure that RDNZ draws upon for its 7,000-disorder framing and research evidence base.
Regional players
- Rare Disease UK: UK campaign focused on rare disease policy and strategy development; comparable mission in driving national rare disease frameworks, similar to RDNZ's advocacy for NZ's first Rare Disorders Strategy.
- Malaysian Rare Disorders Society: Malaysia-based rare disease patient advocacy group operating across a similarly small national population; shares the Asia-Pacific context, emerging-policy landscape, and community-collective advocacy model.
Market position
Strengths4 records
Weaknesses3 records
Competitive moat4 records
Key risks5 records
Key highlights6 records
Customer concentration
Rare Disorders Nz social profiles
Digital presenceRare Disorders Nz financial estimates
Financial estimateRevenue estimate
Valuation estimate
Rare Disorders Nz leadership team
Management profileNumber of profiles
Profiles2 records
Rare Disorders Nz funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Rare Disorders Nz M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about Rare Disorders Nz
What does Rare Disorders Nz do?
Rare Disorders NZ is a registered charity that serves as the collective voice for the approximately 300,000 New Zealanders living with a rare disorder. The organization coordinates a network of 150+ disorder-specific support groups, delivers patient and caregiver resources, advocates for policy change through parliamentary channels, and operates the national Rare Disorders Research Network connecting researchers across institutions.
Is Rare Disorders Nz a public or private company?
Rare Disorders Nz is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Rare Disorders Nz founded?
Rare Disorders Nz was founded in 2017. It employs 1 to 10 people.
Where is Rare Disorders Nz based?
Rare Disorders Nz is headquartered in Wellington, New Zealand, in the Oceania region.
How does Rare Disorders Nz make money?
One revenue line is on record: donations and Charitable Funding.
Who are Rare Disorders Nz's main competitors?
Direct peers on record are EURORDIS - Rare Diseases Europe, Genetic Alliance UK, Canadian Organization for Rare Disorders (CORD) and Rare Voices Australia. National Organization for Rare Disorders (NORD) is listed as a broad incumbent. Orphanet is listed as an others. Regional players are Rare Disease UK and Malaysian Rare Disorders Society.
Does Rare Disorders Nz have an API?
No public API is recorded for Rare Disorders Nz.
What industry is Rare Disorders Nz in?
Rare Disorders Nz's product category is Rare Disease Advocacy Services. Its primary akta.pro industry code is BPAGACAM, Rare Disease & Special Needs Support Organizations. Its NAICS code is 6241 and its SIC code is 8300.