The March 2025 National Haemophilia is now available to read online and in print. In this issue we feature:
- World Haemophilia Day & Rare Disease Day
- Exercising to manage pain
- Australian Bleeding Disorders Conference 2025
- Results of the HaemPref survey
- How bleeding disorders are diagnosed
- Understanding your menstrual cycle with a bleeding disorder
- Factored In: Being rare
Thank you so much to the community members and health professionals who contribute to National Haemophilia. Your insights and expertise are invaluable.
Raising Awareness
February 28th saw us raising awareness for Rare Disease Day, sharing stories from our community of living with rare diseases. The 2025 them of More than you can imagine highlights that therer are more rare bleeding disorders, more people affected, and more stories from people in our community than we might realise. Learn more.
Read stories from young people with rare bleeding disorders in Factored In: Being rare.
Coming up next month is World Haemophilia Day on 17 April. This year’s theme is Access for all: Women and Girls Bleed too. With only approximately 100,000 women and girls identified worldwide with haemophilia, VWD or other bleeding disorders, International experts are concerned about the many more who are still undiagnosed. Learn more.
For Women and Girls
Recognising the work that needs to be done to represent and support women and girls more effectively, HFA Council has established a Women and girls advisory group to advise it on the needs and issues of women and girls affected by bleeding disorders and to propose a national strategic response. Learn more.
Also in this issue of National Haemophilia is a comprehensive article on understanding your menstrual cycle with a bleeding disorder. Laura Bardell, registered counsellor and former midwife, teaches us about the menstrual cycle – not just the physical/hormonal aspects, but also emotional – and how we can care for ourselves through each stage. Learn more.
Australian Bleeding Disorders Conference 2025
Registration is now open for the Australian Bleeding Disorders Conference 2025. Visiting Brisbane from 16-18 October, the Conference is an opportunity to connect with others in the bleeding disorders community. Share, learn and hear from different perspectives on current trends, emerging and new therapies, challenges, insights and more. Find out more.
Exercise and movement for persistent pain
Musculoskeletal pain is a persistent companion for many people with a bleeding disorder. Most people are familiar, to varying degrees, of the benefits of movement and exercise as a key management strategy for a range of medical conditions; its role in managing persistent pain is perhaps less understood. Cameron Cramey, Senior Physiotherapist for the Royal Adelaide Hospital HTC, shares a summary of his 2024 World Federation of Hemophilia Congress presentation on the role of physiotherapy in the management of persisent pain. Read it here.
Current and emerging haemophilia treatments
Last year we partnered with CaPPRe to discover our community’s haemophilia treatment preferences. 72 people participated in the HaemPref Survey, sharing their thoughts and haemophilia treatment goals. Thank you to everyone who took the time to participate. Read the results.
Gene and emerging therapies in haemophilia are a hot topic among the community. AHCDO Research Fellow, Ashley Fletcher, shares his highlights from the Blood 2024 conference in this issue of National Haemophilia. Learn more.
Other news
Also featured in this issue of National Haemophilia is ‘Do you have a bleeding disorder?‘ an article where haemophilia clinical nurse consultant, Kara Cordiner, explains the role of the ISTH International Bleeding Assessment Tool (ISTH-BAT).
We also remind people to participate in the PROBE Australia Study, and direct you to update your contact details if they have changed.
I hope you enjoy reading National Haemophilia!
