In Western Australia, hundreds of Peer Support Groups and other Non-Government Organisations (NGOs) provide crucial support for those living with rare, genetic, and undiagnosed conditions.

 

In 2021 ConnectGroups was engaged by the WA Department of Health (Office of Population Health Genomics) to undertake a project aimed at understanding and identifying the challenges faced by peer Support Groups and Organisations in the Rare, Genetic and Undiagnosed Conditions sector. This resulted in 8 recommendations presented to the Health Department. The Health Department has now re-engaged ConnectGroups to address Recommendations 3 and 5 to promote awareness of Groups/Organisations and of the Rare, Genetic, and Undiagnosed Conditions that they target and to establish a specialised Training and Development Program to promote self-sufficiency in order to build the capacity and capability of the sector (see report here).

 

The Strengthening the Capacity and Capability of the Rare, Genetic and Undiagnosed Conditions Sector in WA Sector Development Program will be a co-designed program to support Groups and Organisations within the sector to increase their capacity and capability to remain sustainable and continue to provide their invaluable services to the wider community.

Sector Development Training Program

An accessible opportunity for groups and organisations looking to build their capacity and capability by upskilling staff and volunteers.

Click here for more information.

Podcast Features

Listen to some of the inspiring stories of people living with rare, genetic, and undiagnosed conditions.

Click here to view our podcast series.

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.

For more information on ConnectGroups’ RGU project, please contact:

Training and Development Coordinator: Emily Mostyn-Brown

(08) 9364 6909

emily@connectgroups.org.au

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