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A Professional Body is an organisation with individual members practicing a profession or occupation in which the organisation collates the knowledge, skills, conduct and practice of that profession or occupation. NPON operates as a Professional Body for Patient Organisations.
03.2024 EDITION
Patient Organisation Health System Contribution Study
At the NPON Australia conference held in May 2023 in Sydney, there were a number of proposed action items identified by the community including completing a survey of member activities to prepare a report on the impact and importance of our work within the health system. This would allow us to to raise awareness of our work as patient organisations at different levels within the health system, to encourage referrals and be recognised as part of the health system.
We are now commencing a study to develop a report on the impact and importance of our work as patient organisations within the health system. To do this we have designed a survey under the guidance of the NPON Standing Committee that gathers information on the work of patient organisation now, and what they have planned for the future.
We are asking all NPON Australia member Chief Executives (or equivalent/delegate) to complete the survey by 10 May 2024 To access the survey, please Click here
We are also conducting a survey about the role and health of Chief Executives (or equivalent) to understand the scope of these roles and whether there is a personal impact on health for charity leaders. We all do really well at supporting patients, so we need to make sure the health of charity leaders is also looked after. To access the survey, please Click here and we’d ask this also be completed by 10 May 2024
Thank you to the following companies that have generously supported this important initiative
The NPON community welcomes Clare Sullivan as the new CEO at MND Australia. MND Australia was established in 1993 and is the national peak body of state organisations that support those living with and impacted by motor neurone disease (MND). Clare is based in Canberra and many of you will know her from her 20 years’ of executive experience in advocacy and leadership across the not-for-profit, government and private sectors.
You can read more about Clare in the statement from MND Australia.
Welcome Clare!
Tools of the trade
Clinical trials are an important consideration, not only as part of treatment but in the context of allied health and supportive care. NPON members are welcome to use, adapt and brand these resources with your own logos to support and empower your community.
The Charcot Marie Tooth Association Australia Inc. (CMTAA) began as a Support Group in 1988, and was incorporated in 1990 as a registered charity. Over the years they have evolved and in 2018, the National Committee proposed the Association become known as CMT Australia.
A next step in CMT Australia’s evolution is working with CCDR to provide their community with a Pathways Telehealth Nurse. CMT Australia is currently recruiting a volunteer nurse and more information is available here
This month with our community champions, we recognise Lipoprotein(a) Awareness Day to raise awareness worldwide of elevated Lipoprotein(a), also known as Lp(a). This is a predictive marker that can be used to identify those at higher risk of cardiovascular disease.
Expressions of Interest are open to nominate for membership on NPON Standing Committees. Nominees must be in a leadership position of for Chief Executives, Executive Directors (or equivalents) in a Patient Organisation (under the current working definition).
Each Standing Committee meets four times per year and is responsible for guiding the work of each country-based NPON community.
The next Expression of Interest round will close on 20 June 2024. Terms of Reference are available here
To submit an Expression of Interest, please provide a short cover email explaining your interest in the position and attach a short CV. Email to administration@cc-dr.org
Hepatitis Australia is recruiting a new CEO. Reporting to the Board, the CEO will lead the implementation of a new strategic plan and identify opportunities to realise the mission and objectives of Hepatitis Australia. Maintaining a strong public profile, the CEO will bring a strategic growth mindset and play a vital role engaging with stakeholders and members across the sector, as well as with community and government. Find the job advertisement here
If you have a job that you would like to advertise, please contact administration@cc-dr.org
The 2023 conference theme was:
Breaking the Cycle
For Patient Organisations this means:
- Breaking the cycle of consultations and roadmaps that go nowhere, primarily because there is rarely funding for implementation
- Breaking the cycle of consultations that take a top-down approach: We want to encourage debate and not silence it
- Breaking the cycle of our most vulnerable populations being left behind
- Breaking the cycle of funding that is not sustainable for Patient Organisations
Video recordings of addresses and panel discussions are available below.
The purpose of the National Patient Organisation Network (Network) Standing Committee (the Committee) is to oversee the Network’s program of work and annual conference. In addition, the Committee can make recommendations and representations that are the result of consensus by the Network. The Committee works in the context of the Australian health system including but not limited to health policy, research, health systems and health technology assessment. Terms of Reference are available here
The Standing Committee address ongoing matters that require collaborative efforts from all members. Steering Committees are convened as needed to set policy direction and oversee policy projects under their area of expertise.
| Name | Organisation | Term Start | Term End |
| Lisa Murphy | Stroke Australia | October 2022 | September 2024 |
| Kris Pierce | SCN2A Australia | January 2024 | December 2026 |
| Sarah Powell | Pink Hope | May 2023 | April 2025 |
| Petrina Fraccaro | Cystic Fibrosis Queensland | October 2022 | September 2024 |
| Dalal Baumgartner | SATB2 Connect | January 2024 | December 2026 |
| Kate Holliday | Centre for Community-Driven Research (Ex-officio) | January 2024 | December 2024 |
Meeting History: (1) 2017 July 24; (2) 2017 October 17; (3) 2017 November 23; (4) 2018 April 4; (5) 2018 September 12; (6) 2018 May 8; (7) 2019 February 14; (8) 2019 September 18; (9) 2019 November 11; (10) 2020 February 26; (11) 2020 June 9; (12) 2021 July 14; (13) 2021 July 28; (14) 2021 September 17; (15) 2022 February 1; (16) 2022 April 4; (17) 2022 July 28; (18) 2022 October 5; (19) February 2023; (20) April 2023 (21) August 2023; (22) November 2023 – deferred; (23) May 2024; (24) August 2024; (25) November 2024
Patient Organisations can register to be a member of the National Patient Organisation Network.
Click here to register your organisation
Members have access to:
– Regular newsletters with updates that are relevant to our part of the health system
– Webinars and networking events; Tools and resources to support your work
– Collective advocacy to support the profession of working in and running patient organisations
Click below to see the NPON Australia membership
