Research Partnerships

In line with the National Strategic Action Plan for Rare Diseases’ (the Action Plan) Research and Data Pillar, Rare Voices Australia (RVA) supports the need for high quality collaborative research that is person-centred and positively impacts the lives of Australians living with a rare disease. RVA welcomes genuine partnerships with groups planning or undertaking research that addresses core principles outlined in the Action Plan.

Research Priorities

RVA partners in research that:

  • Aligns with the Action Plan
  • Relates to, or is transferable to, a range of rare diseases and is collaborative and person-centred
  • Responds to unmet need in rare disease and/or addresses existing gaps
  • Involves coordinated and collaborative data collection that facilitates increased knowledge of rare diseases
  • Can ultimately be translated into clinical care

What RVA Can Bring to Your Research Project

RVA is highly experienced in providing consultancy to researchers with a focus on linking and translating research into policy. RVA consultancy includes:

  • Provision of broad rare disease stakeholder knowledge and expertise as Australia’s national peak body for Australians living with a rare disease, including a strong track record in effective rare disease advocacy and policy influence
  • Support to align your research with priorities in the Action Plan
  • Support to identify opportunities for translation of research outcomes into measurable impact, including rare disease policy reform to achieve the best possible health and wellbeing outcomes for Australians living with a rare disease
  • Provision of rare disease consumer expertise
  • Guidance on a person-centred approach to research co-design and implementation
  • Links to a network of over 100 rare disease patient groups and other rare disease stakeholders (in most cases, RVA can provide these links without a formal research partnership if this is all that is required)
  • Assistance convening focus groups to facilitate meaningful consumer engagement
  • Support leveraging external grant funding for rare disease research

Rare Voices Australia’s Research Partnership Guidelines

Please read RVA’s Research Partnership Guidelines before contacting us with your Research Partnership Proposal.

How to Contact Rare Voices Australia With Your Research Partnership Proposal

To submit a research partnership proposal, please fill in RVA’s Research Partnerships Proposal Form below. Please submit the form as early as possible and not fewer than 10 business days prior to the grant submission deadline. The form will also prompt you to send a project synopsis via email, including objectives and expected outcomes.

Your request will be reviewed by RVA’s Chief Executive Officer and Research and Evaluation Manager against RVA’s Research Partnership Guidelines. Proposals aligning with RVA’s research priorities, and the Action Plan will be progressed to the next step, which usually involves further discussion via video conference.

Please note: A new Research Partnership Proposal must be submitted to RVA for every project, including from existing RVA research partners. This includes new project proposals, proposals that are a continuation of previous projects, or resubmissions of previous or similar Research Partnership Proposals to new grant rounds.

RVA Research Partnerships Proposal Form

Contact details
Grant information

Please enter N/A for this section if not applicable.

Check the box below if you are not applying for a grant or already have funding in place:
Relevance to rare diseases in Australia
You can access the Action Plan and summary documents on RVA’s website.
Proposed roles/commitments for RVA
Before completing this section, please review RVA’s Research Partnership Guidelines for examples of what RVA can bring to your research. The answers to the following questions can be brief and tentative, as the details will be discussed and confirmed in collaboration with RVA. Please note, as a non-profit charitable organisation, RVA may not always have the capacity to meet demand for in-kind contributions. Some contributions may need to be appropriately costed as a separate line item in the grant budget.
To engage in a formal RVA Research Partnership, please confirm your commitment to the following:
Information about any previous requests for an RVA Research Partnership
Do you have any past or current research partnerships with RVA?(Required)
If yes, please provide the following:
Is this proposal a continuation of work from any previous RVA research partnerships?(Required)
Is this a resubmission, or similar proposal to a previously unsuccessful application for which you engaged RVA as a partner?(Required)

To ensure confidentiality, RVA does not accept details of your grant proposal via this web form. On completion of this form, please email your grant proposal/synopsis to [email protected], with the email subject line: ‘Proposal for Research Partnership – [your surname]’.

Your request will be reviewed by RVA’s Chief Executive Officer and Research and Evaluation Manager against RVA Research Partnership Guidelines. Proposals aligning with RVA’s research priorities and the Action Plan will be progressed to the next step, which usually involves further discussion via video conference.

If you would like to discuss any aspect of this process in more detail, please contact Dr Falak Helwani, RVA’s Research and Evaluation Manager, at [email protected] or +61 (0)448 505 184.