The June 2026 National Haemophilia is now available to read online and in print. This is an enormous edition – over 40 pages – with 27 pages of Congress reports and reflections. In this issue we feature:
- Vale Ann Roberts
- WFH World Congress
- World Haemophilia Day
- Women Bleed Too survey results
- Bleeding Disorders Awareness Month
- Red Cake Day: Jasmin and Lincoln’s Story
- Factored In: Nine young Aussies share their Congress highlights
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 Alan Dursun, Suzanne O’Callaghan, Claudio Damiani, Abi Polus, Hayley Coulson, Shirley Wong, Rosamma Varghese, Joanna McCosker, Jane Portnoy, Monique Manzanera, and personal stories/reflections from Jasmin, Ben, Dev, Frazer, Harrison, Javonte, Khali, Louie, Yamato and Nikolas.
Vale Ann Roberts
On 23 March 2026 we were saddened by the passing of Ann Roberts. Ann was a member of the Haemophilia Foundation Victoria (HFV) committee from 1992 and held numerous positions at HFV. In National Haemophilia, we reflect on her achievements and the impact she had on the bleeding disorders community.
Raising Awareness
Community play an important part in helping to raise awareness for bleeding disorders. In this issue of National Haemophilia we showcase photos from World Haemophilia Day – including a gorgeous water tower lit up red for Mason by his family in regional QLD.
We also share Jasmin and Lincoln’s story about raising awareness for Bleeding Disorders Awareness Month. In October 2016, Lincoln was diagnosed with haemophilia. Two weeks later, Jasmin held her first Red Cake Day, starting what would become a yearly tradition and an opportunity to connect, raise awareness, and foster a genuine sense of belonging. 10 years on, Lincoln has become an advocate in his own right, and a role model for other younger children and families.
Promo items for BDAM, including posters, toys and activity sheets, are now available for pre-order (with delivery in September) – order yours here.
Women and girls with bleeding disorders
It has been recognised internationally that women and girls with bleeding disorders face particular challenges, with delayed diagnosis and access to specialised treatment and care. In National Haemophilia, we share the ‘Women bleed too’ survey results, where we asked about the experiences of Australian women and girls with bleeding disorders in health care settings, and what tools or resources can help.
WFH World Congress
In April 2026, the WFH World Congress took place in Kuala Lumpur, Malaysia. Bringing together 1,900 people from 130 countries it was an opportunity to discuss the latest information, debate issues relevant to bleeding disorders and look to the future.
With over 30 Aussies attending – including health professionals, community members, foundation representatives and nine young people – there has been a wealth of information brought back to our HTCs and community.
Congress, WFH Global Youth Training and Global NMO Training
HFA President Alan Dursun speaks about his experience – his stand-out sessions, key take-away messages, and attending the WFH Global Youth Leadership training and WFH General Assembly. Claudio Damiani, HFA Vice-President and HFACT Secretary, writes about participating in the Global National Member Organisation Training, and how uplifting it was to sit with people from all around the world to work through real problems and identify solutions.
Musculoskeletal sessions
Australian physiotherapists, Cameron Cramey, Abi Polus and Hayley Coulson share reports on their experience attending the musculoskeletal sessions, musculoskeletal management, session highlights and musculoskeletal health in children and young people. These reports are a fascinating look into the latest research and future of comprehensive care.
Improving care and wellbeing
Haemophilia nurses, Shirley Wong, Rosamma Varghese and Joanna McCosker also share their highlights, discussing nurse-led care, enhancing nursing care and improving diagnosis and care for women and girls with bleeding disorders. Social workers, Jane Portnoy and Monique Manzanera explore mental health – adherance and chronic fatigue and resilience and recovery. There is a focus in many of these reports on the impact of bleeding disorders on women and girls, and the ongoing need for improved access to diagnosis and care.
Von Willebrand Disease
Von Willebrand disease (VWD) figured prominently at Congress, and HFA’s Suzanne O’Callaghan shares her report on the session, exploring the 100 year history of VWD and diving into current and future treatments. There are exciting new developments, with an international commitment to improving awareness, diagnosis, treatment and care for people with VWD.
Youth
HFA was able to send 9 young people to attend Congress. It was great to see the group bond, attend sessions, ask questions and really take in the international experience. Ben, Dev, Frazer, Harrison, Javonte, Khali, Louie, Yamato and Nikolas share their highlights and reflections in National Haemophilia.
The youth group also took on a project of recording their experiences and interviewing other international Congress delegates. You can watch the videos on our website.
Other news
Also in this issue of National Haemophilia, HFA President, Alan Dursun shares his President’s Report, recognising the strong momentum across many key areas that is currently felt within our community.
We announce that the 2026 Newly Diagnosed folder is now available to order, and provide an overview of the recent South Australia Family Day which was hosted by HFA and brought together more than 100 community members.
Finally, we invite you to participate in the HFA National Survey 2026. This survey is open to all Australians in the bleeding disorders community (including health professionals and supporters). It is your opportunity to help shape HFA for years to come.
We hope you enjoy reading National Haemophilia.
