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The latest National Haemophilia is out and wow, it’s huge! Featuring reports from WFH Congress, World Haemophilia Day and more, there’s a lot of great information for you to read through.
If you’re keen to help raise awareness, World Hepatitis Day is just around the corner, and Bleeding Disorders Awareness Month is coming up in October. Scroll down to see how you can participate.
Also featured in this newsletter is Declan and Bailey’s experience at the recent HFV Youth Day Out – they share why local Foundation meet-ups are so valuable.
You can have your say by participating in one (or more) of the research studies that are currently underway. We’ve included a list at the bottom of the newsletter.
Lastly, you’ll see we’ve added a new section at the end – ‘What’s got people talking’. Did you know HFA shares posts on social media almost every day? June’s most popular post was a story about Tim Demos and weightlifting. Follow us on Facebook, Instagram or LinkedIn to join in the conversation.
Thanks for being part of our community, and happy reading!
National Haemophilia July Issue
The July 2024 National Haemophilia is now available to read on our website.
What’s inside:
• WFH 2024 World Congress Reports
• World Haemophilia Day
• Hepatitis C advocacy update
• Gene Therapy ‘Ask me Anything’ with Dr Michiel Coppens
• …and more!
WFH 2024 World Congress and the EAHAD Congress brought together delegates and experts in exciting forums to debate current and emerging issues in bleeding disorders. You won’t want to miss reading about the experience.
World Hepatitis Day
World Hepatitis Day is coming up on 28 July 2024 – with the theme It’s time for action. This involves taking care of your liver health as well as knowing your hep C status and having treatment to cure hep C, where possible.
Did you know that it is estimated that 1 in 5 Australians with hepatitis C have not been diagnosed and are unaware of their infection? We will be looking for your help to reach the women and men with mild bleeding disorders who may not be aware they were at risk if they had blood products before 1993. Keep an eye out for our social media and news items in the upcoming weeks!
Bleeding Disorders Awareness Month
October is coming up quick, and with it Bleeding Disorders Awareness Month. This year’s theme is ‘New possibilities’, encouraging everyone to consider what’s next for the Australian bleeding disorders community.
To help you raise awareness, our promotional item order form is now live on the website. Order balloons, pens, kids activity sheets, stickers, posters, temporary tattoos and more to support your event.
Catching up with youth – Declan and Bailey
Local Foundation youth catch-ups are a great way to connect with other young people. Declan and Bailey talked to Haemophilia Foundation Victoria (HFV) about the HFV Youth Day Out event and what made it fun.
For more information about youth events, contact your local Haemophilia Foundation. You can find contact details here on the HFA website.
Research Opportunities
Check the HFA website for more information on market research studies about bleeding disorders.
Gene therapy social research study
Do you have haemophilia B (factor IX deficiency)? Or are you a parent, partner or sibling? Would you be prepared to share your views about gene therapy?
HFA and HFNSW are collaborating with the University of Sydney on an important study to find out what people with particular blood disorders and their families think about gene therapy. The findings will help government decision-makers assess whether to fund new gene therapies in Australia.
The University of Sydney is conducting focus groups (small group discussions) and interviews around Australia. You will be reimbursed $160 for your time and your travel costs for a face-to-face interview and $110 for an online interview.
Click on the link below to express your interest in participating in an interview.
Uni of Sydney gene therapy research link >
HEMLINK Pharmacy Co-ordination Program
Do you or your child receive Hemlibra through the HEMLINK Pharmacy Coordination Program (Ie, collecting it at a community pharmacy)?
Do you have any feedback on your experience and how the Program could be improved?
Meld Studios is interviewing people who use the Program. You will be reimbursed for your time.
To express your interest, click on the link below.
Meld Studios HEMLINK feedback flyer >
PROBE Australia Study
How does haemophilia impact on people in Australia?
The PROBE Australia Study helps HFA collect the evidence to advocate for new haemophilia treatments and services. And you can contribute to that evidence – whether you have haemophilia or don’t have a bleeding disorder.
An important part of the study is the comparison group who are Australian adults without a bleeding disorder – a slice of the Australian community. We currently have about 80 participants in this group but need about 120 more.
Can you help with this? Perhaps asking family or friends, colleagues or others you know who are interested in haemophilia and prepared to support the study? It would only take them about 10 minutes to complete.
Support the PROBE Australia Study today and contribute to our real-world evidence on haemophilia!
Linguistic Validation Project
With all the new treatments, there is a lot of work to develop surveys for people with haemophilia. Can you help with a project to check that the wording is right for Australians?
The Connect With Language research team would like to interview 5 male adults with haemophilia and 5 male adolescents aged 12-17 (with their parents present). This Linguistic Validation project will seek your feedback on the wording of a questionnaire. You need to be Australian to participate. You will be reimbursed $90 for your time.
Connect With Language project flyer >
