No 229 March 2025

National Haemophilia March 2025

In this issue we feature women and girls – World Haemophilia Day’s theme of women and girls bleed too, exciting news about the HFA women and girls advisory group, diagnosing a bleeding disorder and understanding your menstrual cycle. There are stories from young people about living with a rare bleeding disorder. Find out how to exercise to manage your pain. And check out the program for the upcoming Australian Bleeding Disorders Conference!

In this issue

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It is a great start to 2025. HFA has hit the ground running, with new initiatives as well as World Haemophilia Day and the Conference coming up this year.

(HaemPref Survey) How do individuals make decisions about treatment? What factors encourage or discourage patients from treatments? What are individuals’…

The group advising HFA Council on issues for women and girls affected by bleeding disorders had its first meeting in February 2025.
World Haemophilia Day 2025 is a worldwide call to action to close the gaps in care for women and girls with bleeding disorders.
Rare Disease Day was celebrated on 28 February 2025 to raise awareness and generate change for people with rare diseases, including rare bleeding disorders.
Haemophilia Foundation Australia is convening the 2025 Australian Bleeding Disorders Conference in Brisbane on 16-18 October 2025.
Exercise and movement are an effective way to manage persistent pain for people with bleeding disorders.
Exciting advancements in gene therapy and other emerging treatments for haemophilia were presented at the Blood 2024 conference.
HFA is still recruiting people to complete the PROBE Australia Study.
The ISTH International Bleeding Assessment Tool (ISTH-BAT) is a standardized scoring system to evaluate if you may have a bleeding disorder.
Starting conversations about periods before menstruation begins can help to normalise and reduce the stigma and shame girls can feel about menstruating.
Adam, Bel and Tayla share their experiences of growing up with a very rare bleeding disorder and what they learned along the way.
What's happening in bleeding disorders?

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