Got a female patient affected by a bleeding disorder? Haemophilia Foundation Australia wants to hear from them.
Haemophilia Foundation Australia has launched a new survey designed to improve the diagnosis, treatment and care for women and girls with bleeding disorders.
The survey, which takes 10-15 minutes to complete, will explore the experiences of women and girls with bleeding disorders when they speak up for themselves in healthcare settings, such as GP, emergency department and specialists’ visits and appointments.
HFA are particularly interested in identifying tools and resources that patients and family members find useful in these settings, such as patient cards, period diaries and fact sheets.
Women and girls with bleeding disorders (or who are carriers of the gene) can complete the survey, along with partners or other family members who have accompanied them to or supported them during medical appointments.
Deidentified survey responses from Australian residents will be collated in a report and shared with the HFA’s Women and girls Advisory Group to help guide the Foundation’s efforts in representation, education and promoting research.
The HFA reports that while roughly 70% of females with a haemophilia-causing gene mutation have normal factor XIII or IX levels, the remaining 20-30% of carriers have reduced clotting factor levels that can result in bleeding symptoms and haemophilia.
Related
Signs and symptoms of haemophilia in females can include bruising easily, heavy and/or long periods and ongoing bleeding or oozing following dental surgery/extractions, other medical or surgical procedures (e.g., blood draws) or other injuries.
Anyone interested in learning more about the survey can contact HFA on 03 9885 7800 or at hfaust@haemophilia.org.au.
The survey closes at midnight (AEST) on Wednesday 8 April 2026.
