Rare Voices Australia

Rare Disease Advocacy Servicesrarevoices.org.au

Rare Voices Australia is the Australian national peak body for the rare-disease community, advocating for the ~2 million Australians living with one of 7,000+ rare diseases through policy leadership, education and research support.

Company typePrivate
Founded2012
HeadquartersMentone, Victoria, Australia
Headcount1–10
GTM typeB2B and B2C
OfferingServices

What Rare Voices Australia does

Rare Voices Australia (RVA), founded in 2012, is the Australian national peak body for the rare-disease community and operates as a Company Limited by Guarantee and registered charity headquartered in Mentone, Victoria. It serves approximately 2 million Australians living with one or more of the 7,000+ known rare diseases, along with their families and carers, providing collaborative policy leadership, advocacy, education and research-support services. RVA was formally commissioned by the Australian Government to lead the development of the National Strategic Action Plan for Rare Diseases, launched in February 2020 with a $3.3 million initial government investment, and continues to lead its implementation.

RVA's core offerings include the RARE Portal (a government-funded national information platform), the RVA Online Education platform (education.rarevoices.org.au) delivering courses to Partner groups, health professionals and the public, the biennial National Rare Disease Summit, an annual Rare Disease Day Parliamentary Event hosted with the Parliamentary Friends of Australians Living with Rare Diseases, the Ambassador Program, and a Research Partnerships Program feeding into the Australian Rare Disease Research Network. It also convenes a quarterly Round Table of Companies with major pharmaceutical firms (including Novartis, Sanofi, Takeda, Alexion, argenx and others) and represents Australia on international bodies such as EURORDIS, Rare Diseases International, ERDERA, APARDO and IRDiRC.

RVA's revenue model is diversified across government grants tied to the Action Plan, deductible donations (DGR-endorsed charity), tiered partnership fees ($100/$50/$25+GST for groups and professionals; complimentary for individuals living with rare disease), pharmaceutical company participation in the Round Table of Companies, and project/grant funding. With a ~13-person staff (more than three-quarters with lived experience of rare disease), it is a small, mission-driven operation whose go-to-market is community-led, event-driven and policy-engaged rather than commercial.

Rare Voices Australia firmographics

Firmographics

Name: Rare Voices Australia
Legal name: Rare Voices Australia Ltd.
Website: https://rarevoices.org.au
Company type: Private
Founded year: 2012
Operating status: Operating
Headcount range: 1–10 employees
Short description: Rare Voices Australia is the Australian national peak body for the rare-disease community, advocating for the ~2 million Australians living with one of 7,000+ rare diseases through policy leadership, education and research support.
Ownership category
akta.pro rank

Rare Voices Australia industry classification

Industry

Product category: Rare Disease Advocacy Services
NAICS: Services for the Elderly and Persons with Disabilities (624120), Services for the Elderly and Persons with Disabilities (62412), Individual and Family Services (6241)
akta.pro primary industry: Rare Disease & Special Needs Support Organizations (BPAGACAM)

Keywords

Rare disease advocacy
Patient advocacy services
Health policy research
Rare disease education
Nonprofit peak body

Where Rare Voices Australia is headquartered

Location

Headquarters

HQ city: Mentone, Victoria
HQ country: Australia
HQ region: Oceania

Offices1 record

Markets served

Rare Voices Australia business model

Business model

GTM type: B2B and B2C
Offering type: Services
Cost components: Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

Government Funding: RVA receives government funding as the national peak body for rare diseases, including initial investment of $3.3 million from the Australian Government when the National Strategic Action Plan for Rare Diseases was launched in 2020.
Donations: RVA is a registered charity with Deductible Gift Recipient (DGR) endorsement. All donations over $2 (AUD) are tax deductible. Donations from corporates, businesses and individuals support programs, projects and services.
Pharmaceutical Industry Funding: Pharmaceutical companies provide funding through participation in RVA's Round Table of Companies and project sponsorship, in accordance with RVA's Working with Pharmaceutical Industry Policy.
Partnership Fees: RVA collects partner fees from rare disease groups/organizations: $100 (+GST) annually for groups with paid staff, $50 (+GST) annually for volunteer-only groups. Individual researchers, clinicians and care professionals pay $25 (+GST) annually. Partnership for individuals living with rare disease is complimentary.
Grants and Project Funding: RVA relies on grants and project funding in addition to government funding to support activities across the rare disease sector.

Pricing tiers

Model	Billing	Price
Subscription	Annual	Complimentary partnership for individuals living with rare disease
Subscription	Annual	Paid partnership for rare disease groups/organisations with paid staff
Subscription	Annual	Paid partnership for rare disease groups/organisations with volunteer staff only
Subscription	Annual	Paid partnership for researchers, clinicians and care professionals

Go-to-market motion2 records

Distribution channels6 records

Marketing channels9 records

Rare Voices Australia product offering

Product offering

Core offering

Rare Voices Australia (RVA) is Australia's national peak body for people living with rare disease. It delivers advocacy, policy leadership, and education programs, and operates the RARE Portal as the country's national rare disease information resource. RVA facilitates the biennial National Rare Disease Summit, manages the RVA Partner Program for rare disease groups and individuals, and runs industry and research partnership programs including the Round Table of Companies and Research Partnerships Program.

Product overview

Rare Voices Australia operates as a national peak body offering a suite of interconnected advocacy, education, and research support services for Australians living with rare diseases. The core product portfolio centers on the RARE Portal (Australia's national rare disease information resource), RVA Online Education platform, Research Partnerships Program, and various stakeholder engagement initiatives including the biennial National Rare Disease Summit and quarterly Round Table of Companies for pharmaceutical partners. These offerings are unified by RVA's policy leadership role and the collaborative implementation framework established through the Australian Government's National Strategic Action Plan for Rare Diseases.

Differentiator

Problem solved

Functional benefit

Products and services

RARE Portal
RVA Online Education
National Rare Disease Summit
RVA Partner Program
Research Partnerships Program
Round Table of Companies

Quantifiable outcome

Led the collaborative development of Australia's first National Strategic Action Plan for Rare Diseases, launched in 2020 with $3.3 million initial government investment
+2 more outcomes

Companies that use Rare Voices Australia

Customer profile

Named customers10 records

Segments6 records

Ideal customer profiles5 records

Rare Voices Australia technology and API

Technology

Technology focussed No

API detail

Has API: No
API docs
API detail

Core technology

AI maturity

App detail

Rare Voices Australia partnerships and signals

Strategic signal

Partnerships

20 partnerships are on record, tiered core and minor.

AlexioncoreStrategic or Co-development Partner · 1 January 2014Alexion is a pharmaceutical company participating in RVA's Round Table of Companies (RTC), a group initiated in 2014 for pharmaceutical companies with common interest in rare diseases and orphan drug development. RTC holds quarterly meetings and workshops discussing topics relevant to rare disease treatment development.
argenxcoreStrategic or Co-development Partner · 1 January 2014argenx participates in RVA's Round Table of Companies for pharmaceutical companies interested in rare diseases and orphan drug development. Quarterly meetings bring together stakeholders to discuss treatment development topics.
BiomarincoreStrategic or Co-development Partner · 1 January 2014Biomarin is a member of RVA's Round Table of Companies, engaging in quarterly meetings and workshops on rare disease treatment development.
ChiesicoreStrategic or Co-development Partner · 1 January 2014Chiesi participates in RVA's Round Table of Companies for pharmaceutical collaboration on rare diseases and orphan drug development.
IpsencoreStrategic or Co-development Partner · 1 January 2014Ipsen is a member of RVA's Round Table of Companies engaging in quarterly meetings and workshops on rare disease topics.
NovartiscoreStrategic or Co-development Partner · 1 January 2014Novartis participates in RVA's Round Table of Companies for pharmaceutical collaboration on rare diseases and orphan drug development.
SanoficoreStrategic or Co-development Partner · 1 January 2014Sanofi is a member of RVA's Round Table of Companies, engaging in quarterly meetings and workshops on rare disease treatment development.
TakedacoreStrategic or Co-development Partner · 1 January 2014Takeda participates in RVA's Round Table of Companies for pharmaceutical collaboration on rare diseases and orphan drug development.
EURORDIS: The European Organisation for Rare DiseasescoreStrategic or Co-development PartnerRVA is actively involved with EURORDIS as part of international rare disease initiatives. RVA is the national alliance representing Australia on the global Rare Disease Day Working Group and Rare Disease Day Steering Committee.
Rare Diseases InternationalcoreStrategic or Co-development PartnerRVA maintains strong connections with Rare Diseases International as part of international rare disease research initiatives and advocacy coordination.
European Rare Diseases Research Alliance (ERDERA)coreStrategic or Co-development PartnerRVA is actively involved in international rare disease research initiatives with ERDERA, contributing to global coordination of rare disease research efforts.
Asia Pacific Alliance of Rare Diseases Organisations (APARDO)coreStrategic or Co-development PartnerRVA engages with APARDO as part of Asia-Pacific regional coordination for rare disease organizations and advocacy efforts.
International Rare Diseases Research Consortium (IRDiRC)coreStrategic or Co-development PartnerRVA maintains active involvement in IRDiRC, contributing to international rare disease research coordination and policy alignment.
Rare Disease DaycoreStrategic or Co-development PartnerRVA is the national alliance representing Australia on the global Rare Disease Day Working Group and Steering Committee that collaboratively develops annual Rare Disease Day activities.
Genomics AustraliaminorStrategic or Co-development PartnerRVA engages with Genomics Australia as part of national connections working to advance genomics in health systems relevant to rare disease diagnosis and treatment.
Rare Care Centre (Western Australia)minorStrategic or Co-development PartnerRVA connects with the Clinical Centre of Expertise for Rare and Undiagnosed Diseases at Perth Children's Hospital, working on rare disease clinical care and services.
Australian Rare Disease Research Network (ARDRN)coreStrategic or Co-development PartnerFacilitated and chaired by RVA and SMAC members, the ARDRN aims to broaden RVA's reach, bringing together a community of rare disease researchers across Australia. Open to all Australian-based researchers formally affiliated with academic or research institutions.
Parliamentary Friends of Australians Living with Rare DiseasescoreStrategic or Co-development PartnerRVA facilitates annual Parliamentary Events hosted by this parliamentary group co-chaired by Senator Wendy Askew, Dr Mike Freelander MP, and Dr Monique Ryan MP to raise awareness among policymakers.
National Aboriginal Community Controlled Health Organisation (NACCHO)minorStrategic or Co-development PartnerRVA acknowledges Aboriginal and Torres Strait Islander people as a priority population of the rare disease sector and works with NACCHO on relevant health initiatives.
Healthdirect AustraliaminorOthersRVA connects with Healthdirect Australia as part of national health information and service coordination relevant to rare disease awareness and support.

Scale indicators10 records

Recent moves9 records

Expansion highlights5 records

Rare Voices Australia competitors and assessment

Company assessment

Emerging players

Orphanet: International reference portal for rare diseases providing disease classifications, expert resources, and patient information. Comparable to RVA's RARE Portal in its rare disease information mission, though operating at a global scale with a different funding model.

Regional players

Genetic Alliance UK: UK alliance of over 200 patient organizations supporting those affected by genetic and rare conditions. Comparable in mission and membership-based advocacy model, though focused on the UK policy environment.
Canadian Organization for Rare Disorders (CORD): Canada's national alliance for rare diseases. Operates as a comparable peak body advocating for a national rare disease framework and drug access, though serving a different national jurisdiction than RVA.
New Zealand Organisation for Rare Disorders (NZORD): New Zealand's national rare disease umbrella organization. Closely comparable as a small national peak body advocating for rare disease policy and patient support in a neighboring country with similar healthcare system structure.

Direct peers

Asia Pacific Alliance of Rare Diseases Organisations (APARDO): Asia-Pacific regional alliance of rare disease organizations. RVA is an engaged partner in APARDO's regional coordination efforts, making this a directly comparable peer in cross-border rare disease advocacy.
Genetic Alliance (US): US-based health advocacy organization focused on genetics and rare disease communities. Operates a comparable model of supporting condition-specific patient organizations and advocating for genetic and rare disease policy.
Rare Diseases International: Global alliance of rare disease patient organizations. RVA is an active member and represents Australia on the global Rare Disease Day Working Group, making this a closely aligned peer in international rare disease advocacy coordination.
EveryLife Foundation for Rare Diseases: US-based rare disease advocacy organization focused on accelerating biotech innovation for rare disease treatments. Comparable in policy advocacy and industry engagement, though more focused on legislative action and drug development.
National Organization for Rare Disorders (NORD): US national peak body for rare diseases, with a similar mission of advocacy, education, and research support. NORD's structure of patient organization membership, policy leadership, and conferences closely parallels RVA's model.
EURORDIS - Rare Diseases Europe: European Organisation for Rare Diseases serves as the equivalent regional peak body for rare diseases across Europe. Comparable as a national/regional alliance advocating for rare disease policy, convening pharma industry engagement, and representing patient communities to government.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

Rare Voices Australia financial estimates

Financial estimate

Revenue estimate

Valuation estimate

Rare Voices Australia leadership team

Management profile

Number of profiles

Profiles29 records

Rare Voices Australia funding detail

Funding detail

Funding overview

Funding rounds

Investors

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

Rare Voices Australia M&A and investment

M&A and investment

M&A

Investments

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

Frequently asked questions about Rare Voices Australia

What does Rare Voices Australia do?

Is Rare Voices Australia a public or private company?

Rare Voices Australia is a private company. It is classified as nonprofit foundation owned and is currently operating.

When was Rare Voices Australia founded?

Rare Voices Australia was founded in 2012. It employs 1 to 10 people.

Where is Rare Voices Australia based?

Rare Voices Australia is headquartered in Mentone, Victoria, Australia, in the Oceania region.

How does Rare Voices Australia make money?

Five revenue lines are on record. Government Funding is the primary driver. The others are donations, pharmaceutical Industry Funding, partnership Fees and grants and Project Funding.

Who are Rare Voices Australia's main competitors?

Orphanet is listed as an emerging player. Regional players are Genetic Alliance UK, Canadian Organization for Rare Disorders (CORD) and New Zealand Organisation for Rare Disorders (NZORD). Direct peers are Asia Pacific Alliance of Rare Diseases Organisations (APARDO), Genetic Alliance (US), Rare Diseases International, EveryLife Foundation for Rare Diseases, National Organization for Rare Disorders (NORD) and EURORDIS - Rare Diseases Europe.

Does Rare Voices Australia have an API?

No public API is recorded for Rare Voices Australia.

What industry is Rare Voices Australia in?

Rare Voices Australia'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 624120.