Our Members:

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”.

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).

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.

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.

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.

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.

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.

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.

 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.

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.

Metastatic Breast Cancer (MBC) Action Australia is a consumer-led organisation dedicated to improving the lives and health outcomes of people living with metastatic breast cancer in Australia. Led by those with lived experience, we use our collective voices to advocate for better policies, services, and supports that reflect the specific needs of our community.

MBC Action 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). We are entirely volunteer run.

We collaborate with supporters, researchers, and organisations on shared priorities, always striving to ensure people with metastatic breast cancer can live their lives to the fullest for as long as possible.

Immunisation Foundation of Australia is a national charity dedicated to improving immunisation awareness, access, and acceptance.

Founded following a personal loss to vaccine-preventable disease, IFA translates research into accessible public information, supports families to make informed decisions, and brings the consumer perspective into clinical research and health policy.

Save Our Sons Duchenne Foundation is the peak patient advocacy organisation for people living with Duchenne and Becker muscular dystrophies in Australia. Our key focus is on DMD/BMD however, the foundation works across the entire neuromuscular ecosystem to improve care, accelerate research, and ensure that individuals and families affected by these conditions have access to the best possible support.

Save Our Sons plays a critical role in strengthening Australia’s clinical trial readiness by funding key medical and research staff within hospitals and neuromuscular clinics. This investment helps ensure that specialised teams are available to deliver clinical trials and emerging therapies for Duchenne and Becker muscular dystrophy. The organisation also supports early career researchers and funds research across multiple areas of the neuromuscular sector, helping to build long-term national capability.

Beyond research, Save Our Sons provides practical support to families through resources, information, and community engagement. The organisation also undertakes strategic advocacy with government, hospitals, the education sector, pharmaceutical companies, and industry partners to ensure that the needs of people living with Duchenne and Becker muscular dystrophy are recognised and addressed.

A major focus of the organisation’s current work is improving adult care. Save Our Sons is leading a significant international project examining the transition from coordinated paediatric care into adult hospital systems, which are often fragmented and less structured. This global initiative aims to identify gaps in care and develop practical pathways to improve coordination and outcomes for adults living with Duchenne muscular dystrophy into the future.

Through these efforts, Save Our Sons continues to drive meaningful change in research, care, and advocacy for the Duchenne and Becker community across Australia and beyond.

Meningitis Centre Australia Inc is a not-for-profit organisation based in Perth, Western Australia. It was established in 1992 by a group of parents and health care professionals who recognised the need to raise public awareness of meningitis and its various forms.

Our Mission Statement

Provide support for families and inform the community about meningitis with the intention of reducing the disease through universal immunisation.

SCN2A Australia is a nationally recognised leader in SCN2A-related epilepsy and developmental and epileptic encephalopathies (DEEs). A nationally registered charity led by people with lived experience, we drive research, capacity building, and advocacy for families affected by SCN2A across Australia — advancing the policy and funding recognition of DEEs as a distinct category within Australia’s rare disease and neurological landscape.

GHLF Australia’s mission is to inspire, support and empower people living with chronic illnesses to put themselves at the centre of their care. For many people, living with chronic conditions can affect independence, work, relationships and overall quality of life.

We provide engagement opportunities and education via our online platforms, support advances in research and advocate for improved access to medicines and healthcare.

Our relationships with healthcare providers, patient organisations, government and industry play an essential role in improving quality of life for our patient communities.

Along with disease-agnostic information, our website includes dedicated education and resource hubs for psoriasis, thyroid eye disease and hidradenitis suppurativa, with more hubs for other under-resourced conditions to come.

GHLF Australia is the parent organisation of CreakyJoints Australia, a division dedicated to supporting people with rheumatic diseases.

Dementia Australia is the source of trusted information, education and services for the estimated more than 446,500 Australians living with dementia, and the more than 1.7 million people involved in their care.

We advocate for positive change and support vital research. No matter how you are impacted by dementia or who you are, we are here for you.