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 regular opportunities for connection and learning for those in the RGU community. One month, we host relaxed and accessible networking sessions to share knowledge, ideas, and resources. The following month, we offer hands-on workshops designed to support group leaders, staff, and volunteers to build skills and confidence in their roles. The best part? Workshop topics are shaped by what you tell us you need most.
We’re pleased to share that Beacon, Alike WA’s new online learning and connection platform for the RGU community, will launch in alignment with Rare Disease Day 2026. The launch will take place at a sundowner event on Thursday 26 February, bringing the community together to connect, learn more about the platform, and hear from a panel of sector experts and experienced voices. Beacon has been shaped by sector needs and is designed to support support groups, organisations, individuals, families, and carers through shared learning, connection, and access to practical resources. You can find more information and register to attend the launch event via the button below.
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.