Building the capacity and capability of RGU groups; empowering individuals, families and carers; creating a healthier future for West Australians
At Alike WA, we understand the unique challenges faced by the Rare, Genetic, and Undiagnosed (RGU) conditions sector. We know that there’s often a lack of awareness—especially in the medical community—and a real need for specialised resources and training to help group leaders and individuals living with RGU conditions. We’re here to change that!
Thanks to the generous support of the Department of Health, we offer a tailored sector development program designed for RGU groups, organisations, and individuals. Our goal is simple: to give you the tools and resources you need to strengthen your group, ensure its long-term sustainability, and empower individuals living with RGU conditions to take charge of their health and live their best lives.
We know how important it is to connect with others who understand your journey. That’s why Alike WA offers monthly networking sessions for those in the RGU community. These sessions provide a relaxed, accessible space to share knowledge, ideas, and resources. Every quarter, we also host a hands-on workshop to help group leaders, staff, and volunteers upskill and become even more effective in their roles. The best part? The topics for these workshops are chosen based on what YOU need most.
We’re excited to announce the development of a new, accessible online platform for support groups, organisations, and individuals within the RGU sector. This platform will be informed by sector needs and provide a space for collaboration, skill-building, and sharing of resources to enhance group/organisation capabilities. It will also offer support to individuals and communities impacted by RGU conditions. Stay tuned for updates!
Observed annually on the last day of February, Rare Disease Day aims to raise awareness about rare diseases and advocate for better access to treatments and medical care. Alike WA is proud to participate in this global initiative, honouring the dedication of our members who work tirelessly to raise awareness, support those at the beginning of their journey, and stand in solidarity with those who have been navigating these challenges for years.
In recognition of Rare Disease Day 2023, Alike WA launched this short film, which showcases people living with rare, genetic, and undiagnosed conditions, and provides a snapshot of their daily challenges.
To celebrate the launch of our new online platform, Alike WA will host a Long Table Discussion, bringing together individuals with lived and learned experience in the Rare, Genetic, and Undiagnosed conditions sector. Centered around the theme “Bridging the Gap: Partnering with Health Professionals Through Lived Experience,” this event will unite the medical community, government representatives, and those with lived experience. Together, we will explore pathways to drive meaningful change, providing greater support for individuals living with RGU conditions, as well as their carers and families. Taking place 25 September 2025.
Alike WA acknowledges the traditional owners of country throughout Western Australia and recognise their continuing connection to land, waters and community. We further acknowledge the traditional carers of the land upon which our office stands, the Whadjuk Noongar people, and pay our respect to them and their cultures; and to Elders past, present, and emerging.
Alike WA acknowledges all those with lived experience, including families, carers and friends. We acknowledge the individual and collective contributions of those with a lived and living experience that is shared with Alike and in respective support groups. We acknowledge that we can only support healthy and connected communities by supporting those with lived experience.
Postal Address: PO Box 1209 Booragoon WA 6954
Office Hours: 9am to 2.30pm, Monday to Thursday
Telephone: (08) 9364 6909
© Alike WA, 2024.
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