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CEO Letter to the HD Community and Stakeholders regarding the Consortium of Australian Huntington's Associations and the HD Network of Australia

Dear Community members and Stakeholders

We are writing to you in response to feedback from our members and stakeholders, requesting clarity on several projects for the Huntington's community. The purpose of our communication is to provide you with information on each project and who is involved.

Consortium of Australian Huntington's Associations (CAHA)

The Consortium of Australian Huntington's Associations (CAHA) was formed in early 2020 and includes five Huntington's State and Territory Associations:

  • Huntington's Disease Tasmania
  • Huntington's NSW ACT
  • Huntington's Queensland
  • Huntington's SA & NT Inc
  • Huntington's Western Australia

The CAHA was formalised in July 2020 through a Memorandum of Understanding with the agreed purpose of collaborating where possible to improve circumstances overall for people impacted by Huntington’s disease.

Huntington’s Victoria is not involved in CAHA and has chosen to focus on its own business agenda. The door is always open for Huntington’s Victoria to engage in dialogue about working openly and collaboratively with the other States to ensure the best possible outcomes for the community.

The CAHA has been working constructively together to improve outcomes for people impacted by Huntington's across the seven states and territories it represents, including:

  • sharing resources, practices and expertise across the Associations;
  • running a national advocacy campaign activity for NDIS and younger people living in residential aged care;
  • coordinating federal grant applications;
  • delivering an NDIS ILC grant across the CAHA states & territories;
  • engaging and collaborating with Huntington's Disease Network of Australia;
  • running a national Huntington's Online Conference; and  
  • undertaking feasibility studies to explore the benefits of forming a single new entity supported by an expert external organisation.

Recently, we have let you know of our plans to merge the five State and Territory Huntington's Associations into a single entity, an outcome of the feasibility studies. We are seeking input and feedback from our stakeholders on the proposed merger. The next step of this process is for the State Boards of  Associations involved in CAHA to vote on the proposed model and make a decision on whether to merge. If all Boards agree to merge, the members of our various Associations will vote on the proposal to merge.

The merger aims to provide better support and services for the Australian Huntington's Disease community. Benefits of forming a single new entity would include:

  • having a bigger voice collectively, thus enabling better advocacy for the whole Huntington’s community;
  • improved, consistent services through the pooling of collective knowledge and best practices;
  • ability to generate much higher revenue from national sources and thus secure our sustainability;
  • increased efficiency so we can improve the quality and scope of local services; and
  • enabling strong state operations to focus on local delivery of care and services as well as local relationships.

The work towards the merger by the CAHA has been characterised by excellent relationships between the State and Territory Associations and a commitment to collaborate to improve the lives of people impacted by Huntington's.

Huntington's Disease Network of Australia (HDNA)

In a separate organisation, Professor Julie Stout at Monash University is conducting an Australia-wide research study with key initiatives:

  • development of a registry of Australians with Huntington’s Disease;
  • a prevalence study to improve understanding of Huntington’s Disease in Australia;
  • a national approach to deliver best models of care for Huntington’s Disease; and
  • preparing Australians with Huntington's disease for future treatments.

Professor Stout has named the organisation the Huntington Disease Network of Australia (HDNA).

CAHA and HDNA are complementary in terms of our aims and work: we both aim to serve the Huntington's community.

While CAHA focuses on supports and services, HDNA is primarily involved in research to develop the best care for Australians with HD.

We encourage our community to engage with HDNA and participate in its key initiatives. To find out more information, or to join the registry visit www.hdna.com.au.

CAHA and HDNA have formed a collaborative and constructive relationship and have regular meetings to update each other on their activities.

Huntington's Community Connect – Huntington's Victoria

Huntington's Community Connect is an online 'peer-to-peer' program operated by Huntington's Victoria.

The CAHA, State & Territory Associations and HDNA have not been involved in the development or implementation of the initiative and cannot provide information or recommendations regarding the service to our stakeholders.

We hope we have been able to provide more clarity and reduce the confusion regarding these projects. 

We look forward to providing further updates on the work of CAHA and HDNA in the near future.

If you have any questions, please get in touch with your state CEO.

 Regards

 

Lenni Duffield

CEO Huntington’s WA

Lenni.Duffield@huntingtonswa.org.au