The March 2026 National Haemophilia is now available to read online and in print. In this issue we feature:
- World Haemophilia Day
- Rare Disease Day
- Glanzmann thrombasthenia: Carly’s story
- Growing older – care needs and support available
- The National Blood Authority
- New and emerging treatments for VWD
- Factored In: Blessed in a different way
Thank you so much to the community members and health professionals who contribute to National Haemophilia. Your insights and expertise are invaluable.
This issue features articles from Monique Manzanera, Jo Cameron, Ashley Fletcher, Nikki Waters, Rhiannon Staveley-Smith, and personal stories from Carly (pseud), Simoni and Javonte.
Raising Awareness
The year has just begun and already we have recognised Rare Disease Day (28/2), Glanzmann thrombasthenia Day (1/3), International Women’s Day (8/3), and prepare for World Haemophilia Day (17/4).
In National Haemophilia we share a detailed report on Rare Disease Day, exploring this year’s focus on equity and how it relates to the Bleeding Disorders community. Personal stories from Carly (Glanzmann thrombasthenia) and Simoni & Javonte also shine a light on the rare bleeding disorder experience.
You can also learn more about our plans for World Haemophilia Day. This year’s theme, ‘Diagnosis: First step to care’ raises awareness for the many hundreds of thousands of people around the world – including women and girls – whose lack of diagnosis limits their access to the right treatment, care and support.
Getting older
For those in our community who are getting older, or caring for a loved one, Monique Manzanera has written a comprehensive article on Growing older: understanding care needs and support available. Monique provides a summary of the many services available, including what they cover, how much they cost, and any wait times that may apply.
New and emerging therapies
In this issue, Ashley Fletcher brings us up to speed on new and emerging treatments for von Willebrand disease. He dives into a range of treatments that work in various ways, such as improving clotting function and targeting VWD factor directly. Most are currently in the experimental stage and make for exciting reading about the future of VWD treatment.
Behind the scenes
Join us as we take a look behind the scenes at some of the services and organisations that support the Australian bleeding disorders community.
Jo Cameron explains the National Blood Authority and their role in relation to product funding, Horizon Scanning and MyABDR. NBA manage and coordinate arrangements for the supply of blood, blood products and blood services in Australia.
Paediatric haemotology nurses, Nikki Waters and Rhiannon Staveley-Smith provide insights from a nurse preceptorship. They share their learnings around why early education, bleed prevention & treatment adherance are so important for people with bleeding disorders, how we can make the transition from paediatric to adult care smoother, and the value of teamwork between nurses, doctors and allied health professionals.
Other news
Also in this issue of National Haemophilia, HFA President, Alan Dursun shares his President’s Report and his focus for 2026, AHCDO welcomes Jenny Morgan, their new Program Officer – Clinical Advisory, and we feature a brand new infographic produced for International Women’s Day highlighting the significant gap in ABDR registrations and data on Australian women and girls with haemophilia, or who carry the gene.
We hope you enjoy reading National Haemophilia.
