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 logo PVI Member

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 logo PVI Member

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.

Crohn's & Colitis Australia logo PVI Member

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 Australia logo PVI Member


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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 Australia logo PVI Member

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 Australia logo PVI Member


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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 logo PVI Member

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 logo PVI Member

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.

Lived Experience Australia logo PVI Member

Cystic Fibrosis Queensland

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Cystic Fibrosis Queensland is the peak community not for profit charity working with and for the increasing number of people living with cystic fibrosis who attend a Queensland Health clinic for treatment. Founded in 1960, Cystic Fibrosis Queensland provides support, services, and hope to those fighting cystic fibrosis. We advocate for the entire cystic fibrosis community, raise funds for research and for our membership programs, and seek to raise much needed awareness of this debilitating condition.

Haemochromatosis Australia logo PVI Member

Childhood Dementia Initiative

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Childhood Dementia Initiative is driving world first action for every child with dementia. We are finding better ways to research and treat the 100+ disorders that lead to childhood dementia. Through bold, innovative approaches and systemic change we are improving outcomes for children with dementia across the world.


Melanoma Patients Australia

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Melanoma Patients Australia is an independent, not for profit organisation dedicated to supporting and representing those affected by melanoma. Melanoma Patients Australia provides a range of critical support services free of charge to melanoma patients, their families, and carers, including emotional support, information, peer to peer connections and external referrals via telephone and a range of digital means.

Immune Deficiencies Foundation Australia logo

Immune Deficiencies Foundation Australia (IDFA)

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IDFA is a national not for profit and leading peak body offering education, awareness and advocacy for Australians living with primary or secondary immunodeficiency

Haemochromatosis Australia logo PVI Member
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Lung Foundation Australia is Australia’s leading lung health peak body and national charity. Founded in 1990, we have become the trusted point-of-call for the 1 in 3 Australians living with a lung disease, including lung cancer. We work to ensure lung health is a priority for all, from promoting lung health and early diagnosis, advocating for policy change and research investment, raising awareness about the symptoms and prevalence of lung disease and championing equitable access to treatment and care.

Haemochromatosis Australia logo PVI Member
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Hypersomnolence Australia is a registered not for profit charity. We are committed to improving the lives of people living with central disorders of hypersomnolence, eg; Idiopathic Hypersomnia and Narcolepsy by providing support, and through advocacy, education and awareness.

Our purpose also includes supporting the medical community work towards a better understanding of central disorders of hypersomnolence, improved access to effective treatment options, and identifying biomarkers that will lead to more appropriate diagnostic tools.

SATB2 Connect logo PVI Member
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SATB2 Connect is the dedicated volunteer-governed charity that supports families and their loved ones diagnosed with SATB2 Associated Syndrome in Australia, New Zealand, and neighbouring countries in the Asia Pacific region.

SATB2 Connect is motivated to find ways to research and educate on the best outcomes for those diagnosed with SATB2 Associated Syndrome.

Our approach is to identify the unmet needs and gaps our community faces, to propel positive outcomes for all individuals diagnosed with SATB2 Associated Syndrome worldwide through collaboration with universities and global SATB2 Organisations; because no family should be left behind.

Angelina CASK Neurological Research Foundation logo
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 ACNRF, an Australian registered charity, was established in 2020 by Giovi and Charles Moschoudis, whose daughter Angelina was diagnosed with the rare genetic disorder known as CASK. In 2022, Giovi Moschoudis extended the reach of ACNRF by founding it in the United States.

ACNRF is devoted to raising funds for research into treatments that may enhance the quality of life for individuals diagnosed with CASK. Additionally, we are committed to providing support to patients, assisting them in navigating the challenges of the disorder, and connecting them with relevant healthcare professionals. Our overarching mission is to promote advancements in medical research pertaining to the nature, diagnosis, prevention, and treatment of CASK gene mutations and associated conditions.

auSEE Inc logo for eosinophilic diseases
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 ausEE Inc. is Australia’s peak national support and patient advocacy organisation representing Australians living with an eosinophilic disease.

Our mission is to improve the lives of those affected by eosinophilic diseases through providing support, evidence-based information, resources, advocacy and by campaigning to raise awareness and funds for research in Australia.

Parkinsons Australia national advocacy, connection and awareness logo
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Parkinson’s Australia is the national advocacy body for people living with Parkinson’s, their families and carers, researchers and health professionals. We promote the best possible quality of life for people with Parkinson’s.

We advocate for the Parkinson’s community on issues of national significance. We work to reduce the impact of Parkinson’s by promoting best practice care to ensure that people can maximise their opportunities to live well and maintain their independence.

Hidradenitis Suppurativa Australia logo
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Hidradenitis Suppurativa Australia (HS Australia) is a not-for-profit health promotion charity dedicated to raising awareness, increasing visibility, and improving the lives of those living with and waiting diagnosis of HS through advocacy and education.

Many complications can occur with HS and delay of diagnosis leads to greater issues for patients. It is isolating, the pain is debilitating, the stigma is heartbreaking, the delays in diagnosis are infuriating and the condition is overwhelming. Hidradenitis Suppurativa Australia is breaking barriers and stigma so that diagnosis and treatment can begin earlier.

The support group offer monthly online meetings with others living with HS, an online support group as well as advocating for changes directly in the hospital and health services.

BEAT Bladder Cancer Australia logo
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BEAT Bladder Cancer Australia is Australia’s leading bladder cancer patient advocacy charity.

We exist to –

  • Raise community awareness of bladder cancer and symptoms;
  • Provide information & support to those touched by bladder cancer;
  • Partner with nurses, medical professionals & GPs to become a trusted patient referral pathway;
  • Influence research, diagnosis & treatment options.

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