Established in 2024, the Women and girls Advisory Group (WOMAG) supports Haemophilia Foundation Australia (HFA) Council in responding to the needs of women and girls affected by bleeding disorders in Australia by
- Providing HFA Council with ongoing information and advice in relation to issues for women and girls affected by bleeding disorders.
- Advising on a strategic national response to address these needs and issues, including education, peer support, representation and advocacy, promotion of research and other activities.
WOMAG members are women representing a range of:
- Bleeding disorders (including carrying the gene for haemophilia)
- Ages
- Australian states and territories.
WOMAG Chair: Leonie Demos
At its inaugural meeting in February 2025, WOMAG identified key issues for women and girls with bleeding disorders in Australia and proposed three key goals to address these issues.
KEY ISSUES
- Underdiagnosis and under-representation in the ABDR (Australian Bleeding Disorders Registry)
- Need for a treatment approach over the female lifespan accommodating hormonal changes
- Treatment issues: access to treatment; being treated differently to males
- Need for evidence: recording and tracking
- Psychological: mental health, body image (bruising/scars), guilt/obligation, perception of bleeding symptoms
- Advocacy: for self and others
- Disclosure/stigma.
GOALS
Education
- About the needs of women and girls with bleeding disorders
- Awareness to achieve earlier diagnosis and increased ABDR registration
Equality to achieve:
- Equal access to testing, treatment and research/clinical trials
- A changed understanding of women with bleeding disorders
Engagement and a supportive environment.
FOR MORE INFORMATION
Contact HFA at hfaust@haemophilia.org.au