As part of the Rare Disease Disability Project (the Project), Rare Voices Australia (RVA) Partner organisations were invited to apply for $25,000 (+GST) to fund projects related to rare disease disability. RVA offered 2 grant rounds – 1 in June 2025 and another in September 2025. Organisations had to be RVA Partners to apply.

Grant recipients were selected by the Stakeholder Reference Group (SRG), which is guiding the Project.

Five grants in total were available to fund projects related to rare disease disability. Projects can focus on tailored resources for the nationally co-designed Rare Disease Disability Project Toolkit or may be standalone resources. RVA developed Grant Guidelines, which included information about the Selection Criteria and the process for shortlisting applications for consideration by the SRG. These Grant Guidelines were distributed to RVA Partners when grant rounds 1 and 2 opened.

One grant was available across the following 5 categories:

• Neurological/neurodevelopmental: conditions that affect the brain, nerves, or how the brain develops
• Progressive/degenerative: conditions that get worse and more serious over time
• Episodic/fluctuating: the impacts come and go, and can change from day to day
• Children with delayed development: children who take longer to learn and do things
• Undiagnosed rare disease conditions: there is currently no name or explanation for the condition

One project per rare disease disability condition category was awarded.

Projects will be delivered in partnership with RVA and could include fact sheets, videos, e-learning programs or virtual peer support activities. Resources will be hosted by RVA on our main website, the Rare Awareness Rare Education (RARE) Portal or through our online education website that complements RVA’s Education Program as appropriate and disseminated via RVA’s communications channels and RVA Partner channels.

We received a high number of applications for Grant Round 1 and thank the RVA Partners that took the time to apply. Applications were assessed on how well they aligned with the Grant Guidelines, objectives and deliverables. They were then ranked by the SRG. Based on the SRG’s ranking, RVA offered grants to 2 recipients: Mito Foundation and Tuberous Sclerosis Australia:

The RISE Project – Rare and Progressive Disability: Inclusive Support and Empowerment: Mito Foundation

The project will co-design disability support resources to educate and empower people living with progressive/degenerative rare diseases and their families/caregivers. The resources aim to reflect the experiences of people living with progressive/degenerative rare diseases and to address shared challenges in accessing emotional and practical support and disability support, especially as their condition worsens and their disability impacts increase.

Rare Disease Disability Sibling Support Program for Parents and Carers (Pilot): Tuberous Sclerosis Australia

The project will co-design resources to help parents and caregivers recognise, understand, and respond to the challenges faced by siblings of children living with a neurological/neurodevelopmental rare disease disability.

RVA Partner organisations were invited to apply for funding as part of the second and final grant round in September 2025. Once again, RVA received a high number of applications and we thank the RVA Partners that took the time to apply. Applications were assessed on how well they aligned with grant objectives and deliverables. They were then ranked by the SRG. Based on the SRG’s ranking, RVA has offered grants to 2 RVA Partners (more information is provided below). We are also collaborating with relevant RVA Partners to develop a resource that meets the needs of people living with undiagnosed rare disease disability impacts.

Development Delay in Children with Rare and/or Undiagnosed Diseases: Best Practice in Navigation, Care and Support: Smith-Magenis Syndrome Australia

The project will develop self-advocacy tools for parents and carers of children with delayed development to better communicate with health professionals and navigate health systems and disability supports.

Living Well with Change: Batten Disease Support and Research Association Australia

The project will co-design resources based on lived experience to help families, educators, disability workers and health professionals understand and respond to the episodic and fluctuating impacts of rare disease disability.

Rare Disease Disability Peer Support: Training for Group Leaders: Syndromes Without A Name (SWAN) Australia

The project will create an online training program and resources for individuals wanting to become Rare Disease Disability Peer Support Group Leaders. Resources will support caregivers and people living with rare disease disability with an undiagnosed rare disease condition or who have been through a long diagnostic odyssey.

RVA will share more information about the RVA Partner Projects as part of our Rare Disease Disability Project updates in our monthly eNewsletter. Subscribe to RVA’s monthly eNewsletter by completing this form for the latest updates.

Contact RVA at disabilityprojects@rarevoices.org.au if you have any questions.