A consumer-led advocacy and research partnership working to improve awareness, care, support and research for people affected by pectus excavatum across Australia and New Zealand.
Meeting SummariesPectus excavatum, sometimes called sunken chest or funnel chest, is a condition where the breastbone (sternum) and surrounding rib cage develop inward, creating a visible indentation in the front of the chest.
For some people, pectus excavatum causes few symptoms. For others, it may be associated with shortness of breath, fatigue, reduced exercise tolerance, chest discomfort, postural changes, body image concerns, anxiety, and reduced quality of life.
Pectus excavatum is often incorrectly described as a cosmetic condition. However, growing evidence demonstrates that even mild pectus excavatum may be associated with cardiac compression, and many individuals experience important physical, psychological, and social impacts that can affect health, wellbeing, and quality of life.
The Australian and New Zealand Pectus Excavatum Consumer Advocacy Group was established because many people affected by pectus excavatum reported difficulties obtaining reliable information, accessing appropriate care, and having their experiences recognised.
Consumers and families consistently identified challenges including:
Limited awareness among health professionals and the wider community.
Lack of trusted, consumer-friendly resources and support pathways.
Physical and psychological impacts being dismissed as purely cosmetic.
Inconsistent access to specialists, therapies, and treatment options.
Advocate for improved recognition of pectus excavatum and equitable access to care and support.
Ensure consumers help shape research priorities, study design and outcomes that matter most.
Develop resources for consumers, families, healthcare professionals and educators.
Build connections between people affected by pectus excavatum across Australia and New Zealand.
Practical information about diagnosis, management options, healthcare navigation, and support.
Identifying evidence gaps and supporting consumer-informed research. Our research priorities are guided by the lived experiences of people with pectus excavatum and their families.
Resources that help healthcare professionals recognise and manage pectus excavatum more effectively.
Advocating for better access to assessment, treatment pathways, support services and recognition of pectus excavatum as a health condition rather than solely a cosmetic concern.
The Australian and New Zealand Pectus Excavatum Consumer Advocacy Group meets on a monthly basis and brings together people living with pectus excavatum, parents and carers, health professionals, researchers, and other stakeholders interested in improving awareness, care, advocacy and research.
Following each meeting, a brief de-identified summary will be made available to provide updates on group activities, emerging priorities, advocacy initiatives and research developments.
We welcome new members and contributors. If you are a person living with pectus excavatum, a parent or carer, a healthcare professional, researcher, or supporter interested in becoming involved, we would love to hear from you.
Please contact us if you would like to attend a future meeting, contribute to advocacy activities, participate in research, or help shape the future priorities of the group.
View Meeting Summary (29 June 2026)Associate Professor Milena Simic is a physiotherapist, researcher, educator and consumer representative at the University of Sydney. She established the Australian and New Zealand Pectus Excavatum Consumer Advocacy Group to ensure that people living with pectus excavatum, their families, clinicians and researchers can work together to improve awareness, care, advocacy and research.
Milena is an active researcher in the field of pectus excavatum, leading and collaborating on research focused on understanding the impacts of the condition, improving non-surgical management and advancing consumer-informed research priorities. In addition to her academic expertise, she brings lived experience as a parent of a child with pectus excavatum.
She is a member of the Chest Wall International Group (CWIG) , the leading international organisation dedicated to advancing the understanding and management of chest wall deformities.
Learn more about Milena's research and contact details via her University of Sydney profile: