Join the National Alliance of Rare Disease Registries

Registering your organisation with the Alliance

The strength of the Alliance will come from its members – your different opinions, and different experiences. We invite you to join the Alliance, and contribute to this discussion. No financial or data commitments are required.

Existing rare disease registry operators

  • You will contribute to the development and implementation of registry standards and share your expertise with other established or developing rare disease registries.
  • You will work with other Alliance members and Rare Voices Australia (RVA) to build a national strategy and foundation for rare disease registries, with the aim of attracting federal investment for registry sustainability.
  • You will participate in the discussions on the feasibility and value of a National Rare Disease Database and Biobank Network, and whether this will be appropriate for Australia, and of benefit to members.

Individuals and groups interested in starting new rare disease registries

  • Access to a database of registries that are already operating in Australia (to avoid duplication of effort).
  • Complimentary access to practical registry tools, templates, standard-operating-procedures, advice and support from an experienced team to help build a registry.
  • Access to specialised registry services via a dedicated Registry Science Unit (e.g. ethics, recruitment, data management, registry best practices etc.).
  • Assistance with access to funding opportunities, Government and industry links.

Rare disease patient groups

  • Learn more about the value and benefits of rare disease registries, to your community and to the broader rare disease system in Australia.
  • Assess whether a new registry, or linking with an existing registry, would be most appropriate and advantageous.
  • Be part of registry governance, through patient representation.
  • Ensure input into the National Rare Disease Registry Strategy, including with Government.
  • Have a say in how registry data is used to support research and policy, to improve the lives of people with a rare disease.

Government bodies

  • Help build a better national picture of rare disease in Australia, via data registries.
  • Ensure rare disease registries meet Government requirements, priorities and outputs.
  • Have direct access to clinical and scientific leaders operating Australian rare disease registries.
  • Use rare disease registry data to support evidence-based health services and policy.

Research organisations

  • Partner with rare disease registries to support long-term rare disease research.
  • Help develop new research initiatives, including around data sharing and biobanking.
  • Help connect appropriate Australian research groups with rare disease registries.
  • Foster international collaborations and data sharing to support research into rare disease.

Industry

  • Help build and improve Australian rare disease registries to deliver industry benefits.
  • Have your needs/preferences directly communicated to rare disease registry operators.
  • Facilitate more trials and access to therapies for Australian rare disease patients.
  • Be partners in improving the overall rare disease landscape in Australia.

You can view current Alliance Members here.


Join the National Alliance

If you are a rare disease registry owner/operator, support organisation or industry partner interested in joining the Alliance, please complete the form below and we’ll be in touch as soon as possible. 

Join the National Alliance - Application Form

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  • By submitting the above information, you certify that you have the authority on behalf of your relevant institution to apply to become a member of the National Alliance of Rare Disease Registries. Please allow up to 7 business days for your application to be considered. Should you wish to remove your institution’s logo/support at any time, please register your request via this email address: communications@rarevoices.com.au