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It’s October! And that means it’s Bleeding Disorders Awareness Month. HFQ kicked off the month with a lovely reception at QLD Government House. With more events to come and plenty happening online, everyone can join in to help raise awareness.
Other big news this month is the launch of HFA’s HaemPref (Haemophilia Treatment Preferences) survey. We encourage everyone with haemophilia, or parents of a child with haemophilia, to take part.
The latest issue of National Haemophilia is hot off the press. This quarter we share information about heavy menstrual bleeding, parenting teens with bleeding disorders and the results of our Gene Therapy Snapshot survey.
Also featured in National Haemophilia is Jack’s latest travel adventure. This time he visited Canada and North America, and gave snowboarding a try! Find out how he managed his haemophilia throughout the trip.
What’s been popular on socials? While BDAM has definitely been front and centre since the start of the month, we were thrilled to see our post ‘Living well with haemophilia’ getting lots of likes and shares.
As always, thanks for being part of our community, and happy reading!
Bleeding Disorders Awareness Month
Bleeding Disorders Awareness Month is here! This year’s theme of ‘New possibilities’ invites all of us to consider what’s next for our community. We’d love for everyone to get involved – participate in an event or host your own.
What’s been happening:
- 1/10: BDAM Colour-in Competition, AUS (Sheets here)
- 2/10: Government House Reception, QLD
- 12/10: HFQ Great Gatsby Trivia Night, Burnie Brae Hall, QLD
- 26/10: HFV Awareness Walk, Albert Park Lake, VIC (Book here)
- 27/10: HFNSW Bay Run, Robson Park, NSW (Book here)
- 27/10: HFWA Bunnings Sausage Sizzle, Subiaco, WA (Book here)
- 28/10: Red Week, AUS
HaemPref Survey
HFA has commissioned the CaPPRe research team to undertake a specialised HaemPref (Haemophilia Treatment Preferences) survey on our behalf. We’re inviting Australians with haemophilia, or parents of a child with haemophilia, to take part and share your views on new haemophilia treatments.
It’s exciting to see innovative haemophilia treatments emerging and becoming available, but it’s important for HFA to know your views. This helps us to represent and support you.
What’s involved:
- an anonymous online questionnaire (taking approx 30 mins)
- giving your opinion of different treatment options
- answering questions about your treatment experience
- other optional questions about you, such as the state/territory you live in.
You will be reimbursed for your time.
Latest issue of National Haemophilia
The September issue of National Haemophilia is now online. This quarter we promote Bleeding Disorders Awareness Month, talk about raising teens with bleeding disorders, including an article by Jaime Chase on heavy menstrual bleeding, report on our gene therapy snapshot survey, and Ashley Fletcher explores novel therapies highlighted at ISTH 2024 Congress.
We also have user tips for recording new treatments on MyABDR, look at hep C and liver health following World Hepatitis Day, and share an article by Jane Portnoy on career and job pathways.
Plus Jack tells us about his latest travel adventure – this time to Canada and USA!
Medical devices affected by 3G network closure
As you may be aware, Australia’s mobile network operators are preparing to switch off their 3G networks. TPG Telecom/Vodafone has already switched off its 3G network, and Telstra and Optus are set to close theirs from 28 October 2024. Medical devices that currently rely on the 3G network will no longer be able to send or receive information.
The TGA has updated its published information on what to do if your device relies on the 3G network.
Jack’s latest travel adventures
Jack’s latest trip has taken him to Canada and the USA – including snowboard in the Rockies! He talks about his trip and how he manages his haemophilia on the road with new treatments.
“The highlight of my trip was probably in British Columbia in Canada. We spent a lot of time snowboarding in the Rockies. It go down to -40c at one point, which was an interesting experience. But I spent lots of days on the slopes and saw some cool wildlife and had some awesome snow.”
BDAM Red Week
The last week of October (28/10 to 3/11) is RED WEEK. We invite everyone to participate and help raise awareness for bleeding disorders.
Red Week ideas:
• Dress in red – you can go all out or keep it simple with a red tie or scarf
• Bake red cupcakes to share in the office or at school
• Test your friends with the BDAM Quiz and Did You Know cards
• Print out the colour-in sheets or have a go making an origami heart
• Embrace halloween and have a spooky red-themed party
For activity sheets, posters, recipes and more head to our website.
