About Huntington’s Community Connect (HCC)

Peer support for the Huntington’s community… by the Huntington’s community, ‘Huntington’s community connect’  

The Huntington’s community connect (HCC) forum is a peer support web-based interface which provides a peer-lead model of capacity building for people impacted by HD through peer support, for the HD community, by the HD community. 

The purpose of the HCC is to provide vital peer support with the following overall objectives:    

  • To enable the HD community regardless of location access to flexible peer support and mentorship for people impacted by HD   
  • To provide a safe space where all members of the community can come together.   
  • Provide a mechanism to deliver up to date, high quality information for people impacted by HD  
  • To provide access to professional psychosocial support to assist in managing with the impacts of HD  
  • Provision of access to education modules targeted health services and disability providers about HD  
  • 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.   


HCC is designed for building connections within the HD community, and for individual and group capacity-building activities which enable people impacted by HD to speak up for themselves, for example the ability to “tell their story” & navigation through the service system. The HCC will build capacity for those who receive, & those who provide, HCC peer mentoring.    

The HCC Forum and It’s Logo

The HCC is a safe space for the community to come together and support one another. The HCC logo symbolises empowerment through connection; the two-toned colours of the half circles demonstrates the similarities and differences of the lived eperience in this community. The interconnection between the circles acknowledges the benifits of connection and communication with one another in order to overcome challenges faces as a result of the impacts of Huntington’s disease. 

Huntington’s Victoria and Peer to Peer Support

The HD community in Victoria has participated in and performed a leadership role in peer to peer support for some time. All support groups were auspice by Huntington’s Victoria and run by the community members via a face to face model. Huntington’s Victoria received consistent feedback from its community members in relation to barriers to engagement which included:   

  • Location of groups  
  • Members were unable to maintain their anonymity  
  • Limitations in recruitment to group, advertising the group, retention of members in a regular face to face capacity    
  • Access to information resources to support local capacity building and individual advocacy   
  • Peer leaders feeling inexperienced to support members of the group as well as limited opportunities for succession planning for when the primary leader is not available  
  • Face to face model is not conducive to accessibility and anonymity  

In response to this feedback in 2019 Huntington’s Victoria accepted an invitation to partner with Monash University with the purpose of improving our IT systems and exploring electronic forums for communication. As a result of this partnership, a rapid evidence review and gap analysis was completed in collaboration with the HD Victorian community steering group. The rapid evidence review and gap analysis provided recommendations for the implementation of the HCC to empower maximum engagement of the HD community. Read the reports here.

Huntington’s Victoria in association with its community sought additional resources through a grant application to the National Disability Insurance Scheme Individual Capacity Building grant. In 2020 we were pleased to be informed that our grant application was successful and that we now had the resources to  

  1. Ensure the Huntington’s Community Connect online peer forum is evidence based to support it sustainability by addressing issues related to barriers
  2. Facilitate a successful peer network to run by and for the HD community.  


Visit the Huntington’s Victoria website for more information about the organisation and it’s mission and vision.