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"We aim to improve the quality of life for all people impacted by HD"

What is Huntington's Disease?

Huntington’s disease is a genetic neurodegenerative condition that impacts the regions of the brain that are responsible for the way we think, move and feel.

Whilst people are not born with Huntington’s disease, they are born with the abnormal gene that will later cause the symptoms of Huntington’s disease.

Our Commitment

Expertise You Can Trust

Our Mission

To sustain a high quality of life for people affected by Huntington’s disease, their carers and their family, while encouraging research towards a cure

Our Vision

All people affected by HD live meaningful and hopeful lives as valued members of the community with equitable and timely access to resources and empowered choices for care and support of the highest quality

Our Priorities

Service Delivery, Information, Advocacy, Research and Sustainability

July 2025 - Newsletter- Movement-with-Alice-HV-website

Movement and Wellbeing in conversation with Alice Cornwall

Information and Awareness Newsletter July – Movement and Wellbeing in conversation with Alice CornwallStaying Active with Huntington’s Disease |...
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HV Information & Awareness Newsletter – June 2025

Information and Awareness Newsletter June - Explore SKY 0515 Clinical Trial Updates on Falcon HD website In this edition of the information and...
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Information and Awareness Newsletter – May 2025

Information and Awareness Newsletter May - Huntington’s Disease Awareness Month 💙We’re proud to release the May edition of our Information and...
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Information and Awareness Newsletter – April 2025

Information and Awareness Newsletter April EditionFor the April edition of the Information and Awareness Newsletter, Tammy sat down with Nic from...
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Information and Awareness Newsletter – March 2025

Information and Awareness Newsletter March EditionFor the March edition of the Information and Awareness Newsletter, we bring to you another special...
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Information and Awareness Newsletter – February 2025

Information and Awareness Newsletter February EditionFor the February edition of the Information and Awareness Newsletter, we are diving into the...
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Information and Awareness Newsletter – January 2025

Information and Awareness Newsletter January EditionWelcome to the first edition of the Information and Awareness Newsletter for 2025! Hear from the...
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Information and Awareness Newsletter – December 2024

Information and Awareness Newsletter December EditionAs 2024 wraps up, we’re excited to bring you the final edition of the Information and Awareness...
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Information and Awareness Newsletter – November 2024

Information and Awareness Newsletter November EditionThis month, we explore a topic that often goes unspoken but deserves attention: grief and loss....
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Information and Awareness Newsletter – October 2024

Information and Awareness Newsletter October Edition  Teddy is a new member of the Huntington’s Community Connect forum and has spent several years...
Beyond the Lab - Episode 8 - huntigntons-victoria- website

Episode 8 of Beyond the Lab – In conversation with Cornelia Wellecke

Beyond the Lab: In conversation with Cornelia Wellecke Episode 8🚨 The 8th episode of our Beyond the Lab interview series is now live! 🎉 Welcome to...
SKY0515 Update - 9 months-data-release-Huntington's-Victoria-website

SKY-0515 Community Release

IMPORTANT CLINICAL TRIAL UPDATE Sky-0515 9-month data release Early Biological Findings Show Target Engagement In a nine-month interim analysis from...
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Awareness and Information Newsletter – January 2026

Information and Awareness Newsletter January 2026 EditionWelcome to the first edition of the Information and Awareness Newsletter for 2026! We have...
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HV Information & Awareness Newsletter – Share your story with Oliver Scalzo

Information and Awareness Newsletter December 2025For the December edition of the Information and Awareness Newsletter, we are excited to share an...
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Information and Awareness Newsletter – October 2025

Information and Awareness Newsletter - HV's Community Spotlight Update   Join the Brain Bites Project  We are excited to bring this great initiative...
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Beyond the Lab – Episode 7 – A Conversation with Dr. Flaviano Giorgini

Beyond the Lab: In conversation with Dr. Flaviano Giorgini Episode 7 🚨 The 7th episode of our Beyond the Lab interview series is now live! 🎉 This...
July 2025 - Newsletter- Movement-with-Alice-HV-website

Movement and Wellbeing in conversation with Alice Cornwall

Information and Awareness Newsletter July – Movement and Wellbeing in conversation with Alice CornwallStaying Active with Huntington’s Disease |...
huntingtons-victoria-newsletter-falconhd-website-launch

HV Information & Awareness Newsletter – June 2025

Information and Awareness Newsletter June - Explore SKY 0515 Clinical Trial Updates on Falcon HD website In this edition of the information and...
Huntingtons-Victoria-News-Post-May

Information and Awareness Newsletter – May 2025

Information and Awareness Newsletter May - Huntington’s Disease Awareness Month 💙We’re proud to release the May edition of our Information and...
Huntingtons-Victoria-News-Post-April

Information and Awareness Newsletter – April 2025

Information and Awareness Newsletter April EditionFor the April edition of the Information and Awareness Newsletter, Tammy sat down with Nic from...
Beyond the Lab - Episode 8 - huntigntons-victoria- website

Episode 8 of Beyond the Lab – In conversation with Cornelia Wellecke

Beyond the Lab: In conversation with Cornelia Wellecke Episode 8🚨 The 8th episode of our Beyond the Lab interview series is now live! 🎉 Welcome to...
SKY0515 Update - 9 months-data-release-Huntington's-Victoria-website

SKY-0515 Community Release

IMPORTANT CLINICAL TRIAL UPDATE Sky-0515 9-month data release Early Biological Findings Show Target Engagement In a nine-month interim analysis from...
Huntington's-Vic-newsletter-October-brain-bites

Information and Awareness Newsletter – October 2025

Information and Awareness Newsletter - HV's Community Spotlight Update   Join the Brain Bites Project  We are excited to bring this great initiative...
Huntington's-Vic-Beyond-the-Lab-Ep-7-SBAC

Beyond the Lab – Episode 7 – A Conversation with Dr. Flaviano Giorgini

Beyond the Lab: In conversation with Dr. Flaviano Giorgini Episode 7 🚨 The 7th episode of our Beyond the Lab interview series is now live! 🎉 This...
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Beyond the Lab: Episode 6

Beyond the Lab Episode 6 🚨 The 6th episode of our Beyond the Lab interview series is now live! 🎉   In the latest edition of Beyond the Lab, we dive...
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Beyond the Lab – Episode 5

Beyond the Lab Episode 5 🚨 The 5th episode of our Beyond the Lab interview series is now live! 🎉   We’re starting this year’s series with a special...
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Beyond the Lab – Episode 4

Beyond the Lab Episode 4 🚨 The 4th episode of our Beyond the Lab interview series is now live! 🎉   In this episode, we talk with Cali Roiboit, a...
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Beyond the Lab – Episode 3

Beyond the Lab Episode 3 🚨 The 3rd episode of our Beyond the Lab interview series is now live! 🎉   In this episode, we speak with a Clinical Trial...

SKY-0515 Clinical Trial

SKY-0515 Clinical Trial A Small Molecule Promises Big!In February 2024, Skyhawk Therapeutics, a biotechnology company at the forefront of developing...
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The AMT-130 Study

The AMT-130 Study An Exciting development in the Huntington’s research space.💙 Exciting research news for the HD community 💙 We are pleased to share...

A Conversation with Katie

A Conversation with KatieThe first time I ever heard of Huntington's was when I was 15. I had never heard of it. Didn't know it was in our family....

A Conversation with Jamie

A Conversation with JamieI found out about Huntington's disease when I was quite young. Apparently, a neighbour told us, but I don't remember. It...