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HD Insights Podcast Series

A Huntington’s Study Group education initiative

The HD Insights Podcast is a long-form interview format in which we speak with researchers in Huntington disease and those helping shape the future of HD treatments. New episodes are released on a periodic basis to help supplement our semi-annual printed edition of HD Insights. The goal of the podcast is to provide further in-depth insights about the people working on treatments that make a difference for those impacted by HD, and to share the interesting stories about their journey.

To listen on Apple iTunes, go to https://podcasts.apple.com/us/podcast/hd-insights-podcast/id1478478065

To listen through Google Play, go to https://play.google.com/music/m/Ik55gxjmvmx67nsjkqz5qbyzxh4?t=HD_Insights_Podcast

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Position Statement: What we don’t need to prove but need to do in multidisciplinary treatment and care in Huntington’s disease
Abstract Background Huntington’s disease is a complex neurodegenerative hereditary disease with symptoms in all domains of a person’s functioning. It begins after a healthy start in life and leads through the relentless progression over many years to complete care dependency and finally death. To date, the disease is incurable. The long progressive complex nature of ... Read more
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National Conference recordings
In May 2021 Huntington's NSW ACT hosted the national conference. This conference was virtual due to the COVID-19 pandemic. There were four key themes for the conference - achieving quality of care; achieving better policy outcomes; achieving better consumer outcomes; and research update.
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Medical ID card
Did you know that we offer free Huntington’s disease identity cards? They provide information on HD and have space for emergency contact details. The cards can be attached to a lanyard to help others understand, or kept in a wallet in case of emergency. If you or someone you love would like a HD ID ... Read more
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Carer Emergency care plan
The Carer Gateway have created an electronic template for carer’s to use and the latest version can be accessed here. An emergency care plan makes it easy for someone to take over from you in a hurry. It has all the information about the person you care for in one place, so you can get ... Read more
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Australians need more protection against genetic discrimination: health experts
Authors: Jane Tiller and Paul Lacaze Published: October 5, 2021 Source: The Conversation   Excerpt: Genomic testing — the ability to read an individual’s genetic code and identify their risk of conditions such as cancer — has opened up huge possibilities in personalised medicine. But it has also introduced serious ethical challenges. Particularly, there is ... Read more
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Normalising life at risk of Huntington’s disease. A qualitative study of backgrounds and coping strategies of fears of genetic discrimination
Studies in the sociology of genetics have shown how living with a predisposition to a genetic disorder often comes with significant psycho-social burdens and struggles. One of these struggles is the fear of genetic discrimination. Despite genetic non-discrimination regulations, research shows people still worry about being subjected to genetic discrimination. This article adds to this existing body of literature by showing why people still worry about genetic discrimination and how they cope with these worries.
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