Rare, Genetic and Undiagnosed Conditions Sector Development Program
ConnectGroups’ Sector Development Training Program for the Rare, Genetic and Undiagnosed Conditions Sector is an accessible opportunity for support groups and organisations looking to build their capacity and capability by upskilling their staff and volunteers. It is also an excellent opportunity to network with other groups and organisations in the sector.
Alternating between facilitated workshops and networking sessions this program runs February 2025 through November 2025 on a Thursday from 10am – 1pm.
NEW Online Platform
ConnectGroups is excited to announce that we will be creating an accessible online platform for support groups, organisations and individuals within the Rare, Genetic and Undiagnosed conditions sector. The platform is sector-informed and will be a place to connect with others and gain skills to build group/organisation capability and to support individuals and communities impacted by RGU conditions.
COMING SEPTEMBER 2025
Rare Disease Day
Rare Disease Day is observed annually on the last day of February to shine a light on the lives of those living with rare diseases. This year, ConnectGroups is excited to host a Rare Disease Day Expo at Hawaiian’s Melville. This event will provide a platform for peer support groups dedicated to individuals and families affected by rare, genetic, and undiagnosed conditions to share their stories and information the important work they are doing.
Date: Friday 28 February 10am – 2pm
Venue: Hawaiian’s Melville, 380 Canning Hwy, Bicton 6157
If any groups would like to host a stall at the expo, please fill out the Expression of Interest Form by February 14. Please be aware that spaces are limited! We warmly invite everyone to come along to learn more about these conditions, meet the people whose lives they touch, and foster meaningful connections with the community.
A Day in the Life
Living with a Rare, Genetic, or Undiagnosed Condition
In recognition of Rare Disease Day, ConnectGroups launched this short film, which showcases people living with rare, genetic, and undiagnosed conditions, and provides a snapshot of their daily challenges.
Long Table Discussion
To celebrate the launch of our new online platform, ConnectGroups will host a long table discussion, uniting individuals with lived and learned experience in the Rare, Genetic, and Undiagnosed conditions sector. Centred on the theme “Bridging the Gap: Partnering with Health Professionals Through Lived Experience,” this event aims to foster collaboration among the medical community, government representatives, and those with firsthand experience. Together, we will explore pathways to drive meaningful change, providing greater support for individuals living with these conditions, as well as their carers and families.
Date: 25 September 2025
Venue: To be confirmed
EOI: Email emily@connectgroups.org.au or contact (08) 9364 6909
For more information on ConnectGroups’ RGU project, please contact:
Engagement Officer – Training and Development: Emily Mostyn-Brown
(08) 9364 6909
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