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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

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.

Dancing at the Vatican documentary

An inspirational documentary telling the story of hope for Huntington’s Disease families. Showing that if enough people who refuse to give in, come together, anything is possible.

Global Connections for Huntington’s NSW ACT

WORDS LEWIS KAPLAN

I had the privilege of attending the EHA conference in Bucharest, Romania in October 2019.

Here’s a few stand-out presentations and posters and Q&A with John Eden, CEO of the Scottish Huntington’s Association.

What is advocacy?

WORDS: LEWIS KAPLAN
All the latest advice and developments on how to advocate in today’s system

The Inheritance documentary

A 2014 documentary feature film about Huntington’s disease written by Bridget Lyon and directed by Jeffrey McDonald