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.
- 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.
- 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.
- 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.