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.
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
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
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.
HSG and its members offer free educational opportunities to providers so they can offer quality care to their patients and families impacted by HD.
This leaflet has been produced by Roche, in consultation with Huntington’s disease organisations, to provide basic information on clinical trials of medicines.
Replay the free online webinars and self-care and wellbeing workshops for carers conducted during Carers Week 2020.
The aim of this book is to familiarise carers with Huntington’s disease, so that they can recognise its symptoms and know what to expect as it progresses.
It also includes general principles of care and tips that other carers have found useful.
WORDS AMY HALE
As everything changes around us day by day, in ways most of us have never experienced before, we are feeling a lot of uncertainty – in our own lives, for our families, friends and for the world in general. In a situation like this, both the known and the unknown can cause increased levels of worry and stress, especially for those in families affected by Huntington’s disease who are already coping with a lot.
Access our Youth Connection counselling services.
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.