RArEST Project

Taking Action Together Toolkit: Improving Health and Wellbeing Outcomes for Australians Living with a Rare Disease

This Toolkit is a multidisciplinary Toolkit that was produced by the rare disease sector, for the are disease sector. It focusses on the health system and aims to build capacity among the rare disease sector to advocate for improving health and wellbeing for people living with a rare disease. It includes case studies from four stakeholders, including Rare Voices Australia, Mito Foundation, SATB2 Connect, and a paediatric neurologist. It also includes four approaches commonly used by advocates in the rare disease sector: networking and collaboration, communication and storytelling, co-design, and patience, persistence, and flexibility.

The Toolkit is available on the Rare Voice's Australia website.

For summaries of the concepts mentioned in the Toolkit, download the one-pagers below:

What does it mean to live with a rare disease?

Co-design and the person-centred approach

The importance of collaboration

Hearing from the rare disease community

Australian Rare Disease Organisations Community of Practice(ARDO-CoP)

The ARDO-CoP is a direct response to the consultation undertaken with rare disease organisation leaders, who identified a need for greater connection, and sharing of knowledge expertise, approaches and experiences for mutual support and capacity-building for systemic advocacy among Australian rare disease organisations.

The ARDO-CoP encourages collaborations and partnerships beyond the group, actively seeking potential speakers to discuss pertinent issues related to rare diseases. Its goal is to produce a collective, evolving pool of knowledge and expertise by sharing learnings and resources. Each member has equal opportunity to participate to the extent they choose, according to their needs, and capacity. New members are welcome to participate.

Health System Simulation Workshops

Under Stream 3, three Health System Simulation Workshops were delivered, focussing on three key issues that impact people living with a rare disease, including integrated, co-designed care systems, transition care from paediatric to adult care, and co-ordinated, whole-of-life-care in rural, regional and remote areas. These simulation workshops require participants to move out of their usual role and take on the role of another stakeholder within the rare disease sector. These workshops are a lot of fun, a great source of networking and collaboration, and help people within the rare disease sector to build their capacity in advocating for people living with a rare disease.