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Coping with Loss and Grief 

 Coping with Loss and Grief 

This booklet summarises a number of activities that have been recommended by experts in grieving. You may be able to use these to help you come to terms with feelings of loss and grief related to HD.  

Grief has many symptoms which can be physical, emotional and behavioural. It can be helpful to acknowledge these symptoms and understand where they come from and why. The booklet describes the different types and stages of grief, and outlines some things you can do which may help you during the grieving process. 

This booklet covers: 

– the different types of grief (physical, emotional, behavioural) 

– the different stages of grief 

– grief management activities and strategies 

– what to do and what to avoid while grieving 

– when to seek professional help 

– losses other than death (independence, stability, etc) 

– family members not at risk of HD 

– moving beyond grief 

– recommended resources. 


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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.

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

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

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.

Huntington Study Group education

HSG and its members offer free educational opportunities to providers so they can offer quality care to their patients and families impacted by HD.

Clinical trials: your questions answered

This leaflet has been produced by Roche, in consultation with Huntington’s disease organisations, to provide basic information on clinical trials of medicines.