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Bleeding Disorders Awareness Month is over for another year, and now it feels like Christmas is literally upon us! If you haven’t already, be sure to RSVP to your local state/territory Foundation’s end-of-year events 🎄
This month we share Ashley Fletcher’s report on new and emerging treatments, photos from Bleeding Disorders Awareness Month, explore the Newly Diagnosed folder with Isabelle, Jake, Dr Chris and nurse Janine, and learn about Maia Meier’s next challenge for Project Elevate Her.
You can also read about TJ’s path to independence with VWD – from a world that felt like raising a child in bubble-wrap to karate, swimming and camping trips.
As always, thank you for being part of our community 🥰 If you were forwarded this email, you can sign up here.
What’s on the horizon for bleeding disorders?
The International Society on Thrombosis and Haemostasis (ISTH) 2026 Congress was held in Paris, France, in July 2026 and brought together clinicians and researchers from around the world to discuss the latest developments in bleeding and clotting disorders.
In the latest issue of National Haemophilia, AHCDO Senior Research Fellow, Ashley Fletcher reports on the continuing development of new treatments, and how the focus is not only on preventing bleeds but also on reducing treatment burden and improving quality of life.
Bleeding Disorders Awareness Month
October saw the entire Australian bleeding disorders community come together to help raise awareness and support people with haemophilia, VWD and other bleeding disorders. There were information booths, walks, picnics, class dress up days, morning teas and so much more – thank you to everyone for all your hard work!
We have popped some of the photos on our socials and website, and will feature them in the December National Haemophilia as well. If you would like to see your photos included, please send them to us.
🎨 Also a reminder that Colour-in Competition entries close Friday 13 November. There are prizes for each category.
2026 Newly Diagnosed Folder now available
We are pleased to announce that the 2026 HFA Newly Diagnosed folder (Haemophilia – a guide for parents of a newly diagnosed child) is now available.
Isabelle and Jake (with baby Mack), HTC Director Dr Chris Barnes, and haemophilia nurse Janine Furmedge speak about what makes the Newly Diagnosed folder so valuable.
The folder is free for Australian families and HTCs. Order your copy here.
Project Elevate Her — Antarctica
How far would you go to raise awareness for women and girls with bleeding disorders?
This month, Maia Meier – mountaineer, advocate, and a woman with VWD – is headed to Antarctica for #ProjectElevateHer. She will attempt to reach the summit of Mt Vinson, Antarctica’s highest mountain at 4,892m, and then to ski the Last Degree (approx. 111km) to reach the South Pole.
Maia will deal with extreme cold, isolation, unpredictable weather, glaciers, crevasses – not to mention her own bleeding disorder – in her quest to raise awareness for women and girls living with bleeding disorders.
Follow @maialetitia or visit www.projectelevateher.com for updates on her journey. We are proud to support Maia on this incredible undertaking.
TJ’s path to independence with VWD
Sam, mother to 7-year-old TJ, shared their story of TJ’s diagnosis with Type 2A von Willebrand disease (VWD) and his treatment journey – from a world that felt like raising a child in bubble wrap to prophylaxis, independence and regaining a normal family life.
“Prophylaxis and port access did more than prevent bleeds. They gave our child freedom. They gave him consistency in education. They gave him independence. They gave us back normal family life.”
What’s coming up?
Throughout the year, HFA and the State/Territory Foundations participate in awareness campaigns and host events to bring the community together. See what’s coming up on the calendar below.
HFWA Men’s Breakfast – 15/11/2026
Hamptons City Beach, WA | RSVP to Fiona at HFWA
HFACT AGM – 19/11/2026
Save the Date
HFACT Bleeding Disorders Clinic – 27/11/2026
Australian Capital Territory
HFNSW Family Camp – 27-29/11/2026
The Tops – Acacia Accom., Stanwell Tops, NSW | Book here
HFQ Women’s Glass Painting – 29/11/2026
HFQ Office, QLD | RSVP to Lauren at HFQ
HFWA Christmas Party – 29/11/2026
Outback Splash, WA | RSVP to Fiona at HFWA
HFV Christmas Picnic – 29/11/2026
Moonlit Sanctuary, VIC | Book here
HFQ Men’s & Partner’s Christmas Lunch – 5/12/2026
Pacific Golf Club, Carindale, QLD | RSVP to Lauren at HFQ
*** 2027 ***
HFWA Family Camp – 29/01/2027
Point Walter Recreation & Conference Centre, Bicton WA | EOI to Fiona
HFV Community Camp – 16-18/04/2027
Lake Dewar, Myrniong, VIC | Save the Date
Research Opportunities
Check the HFA website for more information on consumer research studies about bleeding disorders.
Connect With Language study
The Connect With Language research team needs to interview 2 Australian young people with haemophilia aged 13-17 (with a parent present). This Linguistic Validation project is seeking feedback on whether young Australians with haemophilia will understand the questions in a survey. The young people will be reimbursed $100 for their time.
