On Thursday 26 February 2026, Alike WA marked an important milestone with the launch of Beacon, our online platform supporting people connected to the rare, genetic and undiagnosed (RGU) community across Western Australia.
Held alongside our Rare Disease Day celebration, the event brought together more than 50 people in person and nine guests online, including participants joining from regional Western Australia and the Rare Care Centre Pilbara Hub.
The day was an opportunity to introduce Beacon to the community, but also to bring people together around a shared question: how can we strengthen connection and support for people living with rare, genetic and undiagnosed conditions across such a large and diverse state?
Introducing Beacon
Beacon was developed to expand access to information, services and connection for people in the RGU community.
For people living in regional and remote areas, or those who may find attending services and events in person difficult because of the complexities of their condition, being able to connect online can be particularly important.
During the launch, the Alike WA team introduced attendees to Beacon and shared how the platform will help extend our reach beyond face-to-face services.
Bringing different perspectives into the conversation
Minister Swinbourn opened the event with a personal address that acknowledged his own lived experience in the rare disease space.
The launch also included a panel discussion bringing together perspectives from across the RGU sector, including lived experience, caring roles, advocacy, research and policy.
The conversation highlighted the importance of listening to voices that can too easily be missed, particularly those of people from culturally and linguistically diverse communities and Aboriginal people.
It also explored the role collaboration can play in closing gaps and improving outcomes for people living with rare, genetic and undiagnosed conditions.
More than a diagnosis
One of the strongest messages of the day came from our lived-experience speakers.
Living with a condition is part of someone’s experience, but it does not define who they are.
Their stories spoke to the importance of continuing to pursue interests, ambitions and the things that bring meaning to life. It was a fitting reflection of the 2026 Rare Disease Day theme, “More than you can imagine!”
Thank you to our community
The Beacon launch was made possible by the people who contributed their time, knowledge and lived experience to the day.
We extend our thanks to Minister Swinbourn, our panellists, Albatross Lounge for the beautiful venue in Mt Pleasant, supporters and sponsors, and everyone who joined us in person and online to celebrate the launch and Rare Disease Day.
Most importantly, thank you to the members of the RGU community who continue to share their experiences and help shape how connection and support can grow across Western Australia.
