Community Conference

Since 2013, the Huntington’s Victoria Community Conference has played a crucial role in providing essential information for the Huntington’s disease community. Inspired by the 2011 Huntington’s Disease World Congress Family Day, the conference aims to create a safe, comfortable, and accessible platform for sharing reliable information. Members of the community, along with professionals and researchers, devote their time to share personal stories and insights, with the goal of preparing and empowering individuals for the challenges they may face in living with the disease.

Given the complexity of Huntington’s disease the Community Conference adheres to several crucial objectives listed below:

Education and Awareness: to educate all attendees about the nature of Huntington’s disease including the provision of targeted information about its symptoms, progression and genetic implications. By increasing awareness, attendees can have an informed understanding of the challenges they face and the strategies available to them to manage the impact of the disease on their lives.

Support and Community Building: to provide a supportive environment where attendees can come together, share experiences, and connect with each other. This sense of community and belonging is invaluable, as it does help to address feelings of isolation and offers a space where attendees can find comfort and encouragement from others who understand their struggles.

Access to Experts and Resources: to feature professional and community expert speakers. Attendees have the opportunity to interact with these experts, ask questions, and gain valuable insights. Moreover, participants can access information about available resources and research opportunities related to Huntington’s disease.

Empowerment and Advocacy: to empower all attendees to become advocates for their own health and rights by gaining a better understanding of how to navigate the health and service systems, and how to participate in decision-making regarding their treatment options.

Reducing Stigma: to directly challenge misconceptions and reduce the stigma surrounding Huntington’s disease. By raising awareness and promoting understanding, attendees are better equipped to address societal stigma and discrimination that individuals with this condition do face.

Support for Carers: to provide caregivers with an opportunity to gain further knowledge, learn about coping strategies, and network with other caregivers, providing them with the support they need to continue providing quality care and maintain their own well-being.

Research Updates: to provide updates on the latest advancements in Huntington’s disease research. Participants can learn about ongoing studies, clinical trials, and potential breakthroughs, fostering hope for better treatment options or even a cure in the future.

Through shared experiences, knowledge, and advocacy, individuals and their families can face the future with greater resilience and hope. If you have not had an opportunity to join us at the Huntington’s Victoria Annual Community Conference it is never too late. Stay tuned for more information on the 2024 Community Conference.

Our Community Conference Over the Years