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Have you ordered your Bleeding Disorders Awareness Month promo items? With BDAM literally weeks away, we’ll be shipping these free promo items soon, so don’t forget to put in your order asap.
This week is Women’s Health Week, and to celebrate we have a fantastic set of new videos to share. Watch as Shauna, Lauren, Sal, Bel and Debbie – together with Dawn Rotellini from the US National Bleeding Disorders Foundation (NBDF) – share their advice for other women and girls with bleeding disorders.
The end of the year (and start of 2027) is jam-packed with State/territory Foundation events in ACT, NSW, QLD, VIC and WA. Scroll down for a list and details on how you can join in.
And lastly, we have a reminder to complete the University of Sydney survey on gene therapy if you’re interested. This is an opportunity to share your views about gene therapy for haemophilia with the Australian government through an online survey.
Thank you for being part of our community 🥰
BDAM promo items shipping soon!
Have you ordered your promo items for Bleeding Disorders Awareness Month (BDAM)? We’ve been busy putting everything together and plan to start packing and shipping within the next week or two! If you haven’t put your order in yet, now is the time to do it.
BDAM is celebrated each year in October. To help you raise awareness, we have a range of free promotional items available, including balloons, posters, activity sheets, temporary tattoos, stickers, jibbitz (croc charms) and more.
Order yours today and make that morning tea, information stand, cupcake sale or school show and tell really stand out.
Women’s Health Week
It’s Women’s Health Week! From 7-13 September, we’re sharing stories and information to better support women with bleeding disorders on their health journey.
This year’s theme, ‘Do it anyway’ is all about the small steps we can take towards improving our health – even when life feels busy, messy or imperfect. Across six focus areas – to talk, to fuel, to move, to rest, to breathe and to connect, we share tips, advice and personal stories for women and girls in our community.
Women Talk – new video series
We’re proud to introduce a brand new video series, ‘Women Talk’. These videos feature women from our community sharing their story and advice for other women and girls with bleeding disorders.
The first three videos focus on, ‘What I would say to my younger self’, and ‘Speaking up when your concerns are dismissed’, with Shauna, Lauren, Sal, Bel and Debbie all sharing their thoughts and experiences relating to their bleeding disorder.
“You don’t need permission to feel heard when it comes to your health.” – Bel, factor X deficiency.
Project Elevate Her – Manaslu
This week Maia Meier, a Canadian mountaineer, endurance athlete, and women’s health advocate with von Willebrand disease, is attempting the 8,163m summit of Manaslu. In fact, by the time you’re reading this she may have even reached it!
This is one of seven summits Maia is tackling for Project Elevate Her – a global initiative focused on improving quality of life for women living with bleeding disorders by accelerating diagnosis and access to care.
We are excited to support Maia on this incredible undertaking and look forward to welcoming her to Australia in 2028 when she takes on our own Mt Kosciuszko.
Dawn Rotellini – A voice for women and girls with bleeding disorders
After years of bleeding symptoms and advocating for her own son with haemophilia, Dawn was diagnosed as a symptomatic haemophilia carrier at the age of 59.
She shares her experience being diagnosed, and why it is so important to advocate for women and girls with bleeding disorders. She also gives her top three tips for other women and girls advocating for themselves.
Dawn Rotellini is COO of the National Bleeding Disorders Foundation (NBDF). Her work with the WFH Women and Girls with Bleeding Disorders Committee has shone a light on the need for improved diagnosis, treatment and care.
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.
HFQ Mackay Regional Clinic – 10/9/2026
Mackay, Queensland
HFACT Menstrual Cycles & Wellbeing Workshop – 13/9/2026
Online via Zoom | RSVP to Laura 0409 830 472
Bleeding Disorders Awareness Month – October 2026
National Awareness Month | Find out more
HFWA AGM – 1/10/2026
HFWA Office, City West Lotteries House, Perth | RSVP to Fiona
HFQ Family Camp – 16-18/10/2026
BIG4 Gold Coast Holiday Park, QLD | Contact HFQ to join waitlist
HFWA Ladies High Tea – 18/10/2026
St Martins Tower, Perth | RSVP to Fiona
HFV BDAM Walk – 24/10/2026
Albert Park Lake, VIC | RSVP to HFV
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
HFWA Family Camp – 29-31/01/2027
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.
Gene therapy for haemophilia survey
The University of Sydney is conducting a research study to understand the preferences that patients and their families/carers have for different aspects of gene therapies that have a high-upfront cost to government. This information will help to inform government decision makers in their assessments of new gene therapies.
Who can participate?
The researchers are seeking adults with haemophilia A and B (factor VIII or factor IX deficiency), beta-thalassemia or sickle cell disease, their immediate family members/carers and parents of children (under 18 yrs) with haemophilia from across Australia.
• You need to be 18 years or older to participate.
• It involves completing an online survey (approx 15-20 minutes)
• After completing the survey, you will receive a $25 gift voucher as a thank you for your time.
More information
For more information, please read the participant information sheet.
Please contact Professor Kirsten Howard, The Leeder Centre for Health Policy, Economics, and Data, Kirsten.howard@sydney.edu.au, T: 02 9351 2587 if you have any questions about this study.
This study has been approved by the Human Research Ethics Committee (HREC) of The University of Sydney [HREC Approval No. 2025/HE000195].
