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 support people and groups as they navigate these challenges across Western Australia.
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 support individuals living with RGU conditions to build confidence, and stay connected in ways that feel right for them.
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 in Perth, WA. One month, we host relaxed and accessible networking sessions to share knowledge, ideas, and resources. The following month, we offer skill-building workshops designed to support group leaders, staff, and volunteers to build skills and confidence in their roles. The best part? Workshop topics and networking focuses are shaped by what you tell us you need most.
Beacon offers a way to connect and learn online, supporting people across Western Australia, including those who may not be able to access in-person support. It includes flexible online learning modules that can support people in different ways – whether you’re exploring peer support, involved in a group, or just looking for information and connection.
Not currently part of a peer support group, or unsure if one exists for you?
Beacon offers a range of ways to connect learn and access resources, recognising that everyone’s experience in the rare, genetic and undiagnosed community is different.
The RGU Sector Working Group (SCWG) brings together people from across the rare, genetic and undiagnosed community in Western Australia, including individuals with lived experience, carers, and sector representatives. The group meets with Alike WA staff every two months to share insights, offer feedback, and help guide the direction of the RGU Program. We’re deeply grateful to the members of the SCWG for the care, time and insight they bring to this work.
If you’re interested in joining the SCWG, or would like to share feedback on the RGU Program, you’re welcome to let us know.
In recognition of Rare Disease Day 2023, Alike WA launched this short film, which showcases people living with rare, genetic and undiagnosed conditions, offering a glimpse into everyday experiences and realities.
Not sure whether the RGU Program or Beacon is the right fit for you?
If you’d like to share feedback or be involved in shaping the RGU Program, we welcome your input.
