National Patient Organisation Network Australia
DNA is an active member of NPON which works to support patient organisations with a cohesive and collaborative approach to address common goals. Membership has grown to 135 organisations and DNA committee members Kerrie Jackson and Laraine McAnally attended their inaugural conference in May 2019.
Australian Charities and Not-for-Profits Commission
DNA is registered as a charity with the ACNC.
Healthdirect
In 2023 DNA became a trusted Information Partner of healthdirect. This website is the national, virtual public health information service which provides 24/7 health information, advice and referral for all Australians. In 2022, DNA along with the Australian Dystonia Support Group, noted that healthdirect did not have a specific page for dystonia, and we both requested that they publish one. It can be found here.
Genetic Alliance Australia
DNA is a member of Genetic Alliance Australia which seeks to facilitate support for people directly or indirectly affected by genetic conditions, including dystonia.
Rare Voices Australia
DNA is a partner of Rare Voices Australia which is the national peak body for Australians living with a rare disease.
Neurological Alliance Australia
In August 2024 DNA became a member of the Neurological Alliance Australia which is a collective of not-for-profit peak or national patient organisations representing adults and children living with neurological, neuro-muscular conditions or neurological disorders in Australia.
Centre for Community Driven Research
Through DNA’s membership of the National Patient Organisation Network we are also a member of the CC-DR which is a non profit organisation which facilitates connection between service providers, research organisations, the non-profit sector, practitioners, industries, governments and the communities for which they work to benefit.
Dystonia Coalition
The Dystonia Coalition is a collaboration of medical researchers and patient advocacy groups around the world. DNA is listed as a patient advocacy group on their website.
Australian Neuroscience Nursing Association – review paper on Dystonia
Laraine McAnally, DNA’s Secretary and Treasurer, is a retired Clinical Nurse Consultant in Movement Disorders. During 2022 she has been collaborating on a review paper on dystonia with David Tsui, the Chair of the Movement Disorder Chapter of The Australian Neuroscience Association (ANNA) with a dedicated team of nurses within the chapter. The idea behind this initiative is that from the publication, a self directed learning package will be developed and a collection of relevant articles and video resources will then be sourced from within and outside the group. This will be considered as tier one education for nurses looking to up skill in dystonia and it is hoped that further tiers will be added in the same fashion to keep expanding the competence level.
Page updated 8 August 2024
