Our Members:
PVI membership is open to all health consumer organisations registered in Australia.
Being a Patient Voice Initiative member means you belong to PVI’s community of interest which aims to create opportunities for dialogue, collaboration, information sharing and practical actions to improve health technology assessment (HTA) for and with patients.
Members receive:
- Invitation to three Health Consumer Organisation Roundtables annually, facilitated by PVI for peer to peer learning
- Email updates: regarding upcoming events and improved resources
- Opportunity to directly link your website into improved PVI Resource Library
- Better connection with PVI for your training and resource needs for patient involvement in HTA
- Logo on PVI members page and link to your HCO website.
No membership fee.
Please note it does not include individual HTA advocacy.
To join email: contact @patientvoiceinitiative.org (no space) with:
- contact name
- phone number
- primary email and alternative email
- name of your organisation.
I’m not from an incorporated organisation, can I join ?
Patient advocates and representatives from online patient communities should contact us to join our online group. To join email: contact @patientvoiceinitiative.org (no space).
our current members
Note, not all members chose to be listed on this site.
Arthritis Australia
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Arthritis Australia is the peak body for support, improvement and wellbeing of those living with Arthritis. Through information, advice, advocacy and research, we strive to achieve our mission of “Freedom from Arthritis”.
ADHD Australia
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The ADHD Foundation in Australia is a not-for-profit organisation, registered as a charity with the Australian Charities and Not-for-profit Commission (ACNC) and deductible gift recipient) (DGR) approved by the Australian Taxation Office (ATO).
The Australian ADHD Foundation currently does not receive any government funding to run its support and services. Our amazing support and services are only possible with our 100% volunteer-run workforce.
The ADHD Foundation in Australia are the Direct Makers of change through positive action for people with ADHD and their communities because “Everyone deserves a chance to shine.”
The Australian ADHD Foundation wholeheartedly commits to providing ADHD help and support to people living with or supporting someone with ADHD.
At the Foundation, we work to make the lives of people with ADHD easier and simpler. Whether it’s accessing much-needed support, speaking to a trusted and professional community which can provide advice or simply being a safety network.
What does the ADHD Foundation do?
ADHD Community Services and Support – Delivering the ADHD community national needs.
Provide national leadership and delivery of community support and services across Australia through national projects: ADHD Helpline: ADHD Specialist Referrals:
National ADHD Help and Support line
ADHD Information and Education
Deliver accurate and reliable education and information to workplaces, educational facilities, and organizations across Australia. Australian ADHD Newsletter:
ADHD Social Justice and Advocacy
Accelerate national awareness and advocacy projects across Australia on significant issues.
Making life better and brighter, we’re the ADHD Foundation focusing on those living with ADHD and associated conditions. Our team of experienced, qualified, and knowledgeable professionals applies a customer-centric approach to everything we do.
Crohns & Colitis Australia
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Crohns & Colitis Australia‘s primary purpose is to provide support services, advice and encouragement to people with Crohn’s disease or ulcerative colitis – collectively known as inflammatory bowel disease (IBD).
Dragonclaw
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Dragonclaw are encouraging self-care for those with numerous Autoimmune Inflammatory Diseases, including Rheumatoid Arthritis, Lupus, Ankylosing Spondylitis, MS, Diabetes 1, Psoriasis etc.
Offering Dragon Talks program – weekly zoom meetings with information, support and discussions.
Epilepsy Foundation
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About the Epilepsy Foundation
What is our Vision and Mission?
Our Vision: We believe that no one with epilepsy has to go it alone. Our vision is to ensure that people with epilepsy have equitable access to education and employment, feel safe and connected in their community and no longer die from their epilepsy.
Our Mission: is to reduce the impact of epilepsy on people’s lives.
When was the Epilepsy Foundation established?
The Epilepsy Foundation was founded in Victoria in 1964 by a group of concerned parents to provide support and information to all people affected by epilepsy.
What services do we provide?
· National Epilepsy Support Service– provides information about epilepsy, advice about risk management and living well with epilepsy, individualised support for people with epilepsy who require assistance with accessing supports and community resources, and development of Epilepsy Management Plans.
· National Disability Insurance Scheme (NDIS) Support – we provide information about the NDIS, assistance with pre-planning services, development of Epilepsy Management Plans and Emergency Medication Management Plans, and education and training.
· Education and Training – We offer training programs for families, schools, communities and workplaces to increase awareness and understanding of epilepsy.
· Australian Epilepsy Research Fund (AERF) – the AERF exists to cure epilepsy by funding important research projects.
What are our key aims?
We aim to ensure all Australians living with epilepsy have access to supports and services they need. We do this through our network of partners in all states and territories, and offer direct care for people based in Victoria and New South Wales.
We’re working to reduce the impact of epilepsy and ensure that people with epilepsy have equitable access to education and employment, feel safe and connected in their community and no longer die from epilepsy.
Our primary goals are to raise community awareness of epilepsy, reduce and dispel the stigma associated with this condition, and share evidence-based information and statistics with the public.
To support this, we are developing the Epilepsy Smart Australia Program. The Epilepsy Foundation is working collaboratively to ensure that all Australian people, no matter their cultural background, age or location, can access and benefit from this program.
We’re also working with medical specialists to support cutting edge research through the Australian Epilepsy Research Fund.
We aim to find improved treatments for epilepsy, with the goal of one day discovering a cure, and to identify the best information for supporting people living with epilepsy today.
Hearts4heart
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Supported by Australian and New Zealand cardiologists, hearts4heart is a health promotion charity and peak body that supports, educates and advocates for people living with heart disease.
hearts4heart brings together patients and healthcare professionals with the shared goal to reduce the burden to heart patients.
Haemochromatosis Australia
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Haemochromatosis Australia is the support and advocacy group for people affected by hereditary haemochromatosis, the most common genetic disorder in Australia.
We provide support through our telephone Info Line, website, social media, electronic and print resources.
We work to increase awareness in the community and health professions of the risks of iron overload from haemochromatosis.
We aim to increase early detection and treatment to prevent harm from iron overload and access to appropriate treatment and services.
Lived Experience Australia Ltd
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Lived Experience Australia is a national representative organisation advocating for mental health consumers’ and carers’ choice and wellbeing.
We formed in 2002 with a focus on the private sector. All members of our Board and staff have mental health lived experience as either a consumer, family carer or both.