Attention all members of the Huntington’s disease community! Are you facing barriers to attending in-person support groups? Do you struggle with maintaining anonymity or accessing vital resources? Huntington’s Victoria, in collaboration with the Huntington’s Disease community across Australia, heard your feedback loud and clear. Introducing the Huntington’s Australia Community Connect (HCC) online peer forum!

Thanks to the support of the National Disability Insurance Scheme Individual Capacity Building grant, we have created a platform tailored to your needs. Led by a dedicated steering committee of community representatives, the HCC project went through four stages of development:
• We conducted a rapid evidence review on the national prevalence of Huntington’s Disease.
• We analysed gaps in access to peer support within our community.
• We implemented the HCC peer-led support forum.
• We evaluated the platform’s effectiveness and developed a sustainable model for the future.

But that’s not all! We have made our research findings readily available to you through user-friendly reports on the Huntington’s Victoria website and even published an article in the Journal of Disabilities. Our goal is simple: to empower you with evidence-based information and support tailored to your needs.

Join us on the Huntington’s Australia Community Connect platform and be part of a supportive community where anonymity is respected, resources are accessible, and peer leaders are ready to guide you every step of the way. Together, we can navigate this journey with strength and resilience.

 

The purpose of the Huntington’s Disease Australia Community Connect (HCC) is to provide vital peer support with the following overall objectives:

1. To enable the Huntington’s Disease (HD) community regardless of location access to flexible peer support and mentorship for people impacted by HD
2. To provide a safe space where all members of the community can come together.
3. Provide a mechanism to deliver up to date, high quality information for people impacted by Huntington’s Disease (HD)
4. To provide access to professional psychosocial support to assist in managing with the impacts of Huntington’s Disease (HD)
5. Provision of access to education modules targeted health services and disability providers about Huntington’s Disease (HD)
6. Enable the individual as well as the collective group to exercise choice and control through the development of skills and confidence to better navigate service systems and achieve their own goals.
7. To build individual and group capacity through information acquisition and avenues to increase community participation that increases a greater sense of self-value.