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Our Advocacy


2022 – Neurological Alliance Australia – Submission to the Joint Standing Committee on the NDIS inquiry into the Capability and Culture of the NDIA

2021 – Australian Parliament Joint Standing Committee on the NDIS – Current Scheme Implementation and Forecasting for the NDIS (submission no. 52)

2021 – Parliamentary Inquiry – General issues around the implementation & performance of the NDIS (submission no. 34)

2020 – Neurological Alliance Australia – Position Statement on Aged Care

2020 – Disability Royal Commission (Terms of Reference) | Our submission: Huntington’s Disease and Disability Care

2020 – Aged Care Royal Commission (Terms of Reference) | Our submission: Huntington’s Disease and Residential Aged Care

2020 – Neurological Alliance of Australia Position Paper – expanded Telehealth services for NDIS participants

2020 – Neurological Alliance Australia (NAA) – Joint Statement on Expanded Telehealth

2017 – Transitional arrangements for the NDIS (Terms of Reference) | Sub 31: Part 2 – NAA Joint statement

2015 – Young people in Aged Care (Terms of Reference)Sub 79 – HD and Residential Aged Care

2013 – Inquiry into the National Disability Insurance Scheme Bill 2012 | Sub 570 – NAA Joint statement | Hearing representation

2004 – Inquiry into aged care (Terms of Reference) | Sub 63 – Young People with Huntington Disease and Residential Aged Care Facilities | Sub 64 – Personal Submission – Robyn Kapp OAM | Sub 87 – National HD Association submission | Hearing representation


Huntington’s NSW ACT works with a number of national partners, including first and foremost other state HD Associations:

Neurological Alliance Australia (NAA)

The Neurological Alliance Australia is a collective of national not-for-profit peak organisations representing adults and children living with progressive neurological or neuro-muscular conditions in Australia.

The Alliance works collaboratively to identify and advocate for opportunities that will promote improved quality of life for people living with these conditions and funding to support research.

Genetic Alliance Australia

Genetic Alliance Australia is a peak umbrella group for rare genetic conditions/diseases.

Rare Voices Australia

RVA is the peak umbrella group for the many small organisations supporting people with rare diseases.

Accessible Design Product Alliance

The Accessible Product Design Alliance is a group of not-for-profit consumer health organisations that represent people with chronic conditions who are significantly impacted by inaccessible products and packaging. The aim of the Alliance is to advocate to government and industry to improve access to products and packaging that are easy to use for these consumers and to increase research in the area.

Australian Patient Advocacy Alliance

The Australian Patient Advocacy Alliance is a coalition of Australian consumer health groups. The Alliance pursues policy reform for all Australians with chronic health conditions, and puts consumers at the heart of the health system.

Health Consumers NSW

Health Consumers NSW represents the interests of patients, carers and their families in NSW.