The HFA Newsletter is delivered once per month to our email subscribers. Sign-up here.
Welcome to the latest newsletter
This month we promote Men’s Health Week (10-16 June), reintroduce you to Factored In – our online hub for youth, and share Paul’s story about managing the challenges of haemophilia to pursue – and succeed in – a career he is passionate about.
If you haven’t already, we also encourage you to watch (or read) our interview with Dr Michiel Coppens on Gene Therapy. This ‘Ask me Anything’ dives into all of the details of having gene therapy for haemophilia, including pros & cons for anyone considering the treatment.
We also have a reminder to get your applications in for the Damon Courtenay Memorial Endowment Fund (DCMEF) and to participate in the various research opportunities currently underway.
Men’s Health Week
Each June we celebrate Men’s Health Week. It is an important opportunity to highlight the importance of men’s health, and to promote and support the health and wellbeing of men and boys in our communities.
This year we share information about Men’s Health Checks, Mateship and Keeping Active. We also share personal stories from Mike, Zev, Tim and Paul.
Factored In
Factored In – our information hub for young people with a bleeding disorder – has a new home! Following the launch of our new website earlier this year, we’re excited to announce that all our content from Factored In is now available on the main HFA website.
This includes:
- Info about transitioning to adult services, sex, relationships, periods, sport, and exercise
- Personal stories from young people in our community
- FAQs answered by experts
There is so much great info for young people with a bleeding disorder and their family.
Gene Therapy: ‘Ask me anything’
Our interview with Dr Michiel Coppens is now available to watch (and read) online. Learn about gene therapy for haemophilia and have all of your questions answered in this comprehensive video.
Thank you so much to Dr Coppens and Dr P’ng for joining us to share your knowledge and expertise.
Damon Courtenay Memorial Endowment Fund – Applications due 30 June
The 2024 funding round for the Damon Courtenay Memorial Endowment Fund (DCMEF) is closing soon. Anyone with a bleeding disorder or affected by a bleeding disorder who resides in Australia may apply for a grant. Funding may be used for projects, services and/or care, or an activity aimed at improving the physical and emotional wellbeing and independence of recipient/s.
The DCMEF was established by HFA in 1994 with financial support from the late Bryce and Benita Courtenay in memory of their son, Damon.
Paul talks about his career
From apprenticing as a shipwright to working FIFO as a work health & safety manager, to supporting his brother in a business employing over 60 staff, Paul hasn’t let his haemophilia stop him from having a fulfilling and successful career.
“I’m doing what I enjoy. Building things, solving problems for clients, and doing stuff better.”
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? Interested in sharing your views about gene therapy?
The University of Sydney is conducting focus groups (small group discussions) and interviews around Australia 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.
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)?
Are you interested in providing 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 >
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 >
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.
Often the impact on women is underestimated. But you can see from our 2020 PROBE study results how many women affected by haemophilia experienced acute pain – 57% of women aged 45 years and over, compared to 29% of women without a bleeding disorder in the same age group.
Consider completing the PROBE survey and tell us what your experience is now.
Who can take part?
• People with haemophilia or who carry the gene
• AND people without a bleeding disorder, like family and friends, health professionals, and other people interested in haemophilia
Participate in the PROBE Australia Study today and contribute to our real-world evidence on haemophilia!
