As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is leading the Rare Disease Disability Project (the Project). We are proudly delivering projects for the Peer Support and Capacity Building grant for the National Disability Insurance Scheme (NDIS). If you would like help understanding this article, please reach out to RVA via the contact listed at the bottom of the article. You will find Terms of Reference listed below for a Stakeholder Reference Group (SRG) that will guide this Project. An Easy English version of the Terms of Reference is available.
Overview: The Rare Disease Disability Project
This 2-year Project focuses on peer support and capacity building and will conclude in December 2026. The Project will be guided by a SRG comprising people with lived experience of rare disease disability and diverse representation from priority populations (Aboriginal and Torres Strait Islander people; culturally and linguistically diverse communities; people living in regional, rural and remote areas; and other groups). Building on the existing strengths of the rare disease sector, the Project’s activities will identify and aim to address gaps in peer support and self-advocacy for people living with a rare disease disability. See the SRG Terms of Reference for more information about the Project.
Role of the Stakeholder Reference Group
- Share their lived experience and help to identify gaps to establish priorities
- Select 5 projects to receive grants to develop resources for specific groups of people living with rare disease disabilities
- Help to codesign the Rare Disease Disability Toolkit
- Help oversee program quality and evaluate effectiveness
Successful candidates will be selected through an EOI process and will be guided by the criteria outlined in the SRG Terms of Reference (available below). At least 50% of SRG members will have direct lived experience of a rare disease disability. The remainder of the SRG will comprise family, carers, disability and other experts. EOIs close Sunday, 13 April 2025 and anyone interested can request help with their EOI.
Participation in the Stakeholder Reference Group
SRG members will be expected to:
- Participate in several activities, including online discussions, meetings, interviews/surveys, and workshops
- Review and comment on documents and resources
The SRG will be offered multiple opportunities and methods to provide feedback, including in writing, during meetings, verbally and so on. SRG members will be asked to participate in as many engagement activities as possible, and members will receive an honorarium payment that aligns with the Health Consumers New South Wales Remuneration and Reimbursement of Health Consumers Position Statement. Up to 15 hours each year will be allocated to each member for SRG-related activities from May 2025.
What You Need to Know Before Lodging an Expression of Interest
- Stakeholder Reference Group Terms of Reference [PDF]
- Stakeholder Reference Group Terms of Reference – Easy English [PDF]
How to Submit Your Expression of Interest
Use the online form on this webpage to submit your EOI by Sunday, 13 April 2025.
Questions
RVA is happy to answer any questions you may have about the Project or SRG. You are also welcome to request help with your EOI. Please contact Amanda Dickey, RVA’s Disability Project Officer.
Email: [email protected]
Phone: 0499 860 319
Why This Work Is Important
There is significant unmet need for mainstream, community, and foundational supports among Australians living with rare disease disabilities, including families and carers. Nearly all of the estimated 2 million Australians living with a rare disease experience long-term impacts daily – impacts that meet the Australian Government’s definition of a disability.
This Project will address the unmet needs of people living with a rare disease disability outlined in the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan). The Action Plan is the first nationally coordinated effort to address rare diseases in Australia.
