The
September 2023 National Haemophilia is now available to read online and in print. In this issue we feature:
- Haemophilia: men and babies
- World Hepatitis Day
- Travel - Jack shares his story
- Mouth bleeds
- WFH Shared Decision-Making Tool
- PROBE Australia Study
READ NATIONAL HAEMOPHILIA
Thank you so much to the community members and health professionals who contribute to
National Haemophilia. Your insights and expertise are invaluable.
Bleeding Disorders Awareness Month
Next month (October) is
Bleeding Disorders Awareness Month! The theme for 2023 is
working together.
Over the month we will highlight how working together is working as a community and with your health care team towards good health and wellbeing, including looking after your mental health. We will also launch Red Week from 22 October to 28 October 2023 – where you get a chance to do everything red!!
Events will be held throughout Australia, and we encourage you to host your own. Promotional items are available to be ordered from the HFA website.
Learn more.
WFH Shared Decision-Making Tool
Next month (October) is
Bleeding Disorders Awareness Month! The theme for 2023 is
working together.
With the different types of new haemophilia treatments now available and coming to market, people with haemophilia need to consider their treatment options carefully and understand what is right for them. WFH recently launched their new
Shared Decision-Making tool for hemophilia and in this issue we explore how the tool will help with informed decision-making.
Learn more.
Haemophilia: men and babies
In this article, Kara Cordiner, Penny McCarthy and Megan Walsh, specialist haemophilia nurses at the Haemophilia Treatment Centre in Melbourne, answer common questions on haemophilia inheritance, particularly relating to men with haemophilia and their daughters.
Learn more.
PROBE Australia Study
The 2023 round of the
PROBE Australia Study has now commenced! This study provides important data to HFA about the impact of haemophilia on Australians. How have things changed since new treatments became available? This data will be an evidence base to support HFA advocacy for the Australian bleeding disorders community – and will also help us understand the different experiences of living with haemophilia, for example, women, people with mild haemophilia or inhibitors, getting older.
The survey is open to men and women affected by haemophilia and people without a bleeding disorder.
Learn more.
Jack's amazing travel adventure
If you weren't feeling the itch to travel, you will after reading Jack's story in this issue of
National Haemophilia. Jack is 22 years old and has severe haemophilia A, but this hasn't stopped him from embracing life and going on adventures.
In
National Haemophilia, Jack talks about his trips to Southeast Asia and Europe, and his plans to travel to Canada. He gives a rundown on how he prepares to travel with his treatment, and how he manages his haemophilia while travelling.
“My main travel tip is to plan for every scenario - so you can go on your trip with confidence and travel freely.” Read Jack's story.
World Hepatitis Day
World Hepatitis Day is marked globally on 28 July. This is part of a worldwide campaign to see an end to viral hepatitis. In 2023 the theme is hep can’t wait, reminding us that hepatitis C remains an important issue for our community and that acting now is vital.
Hepatitis C has had a profound effect on our community. In this issue of
National Haemophilia we share personal stories, provide information on how you can take action and receive treatment, and remind everyone to take care of their liver health.
Find out more.
Other news
This issue of
National Haemophilia also provides the latest information on
mouth bleeds,
congenital fibrinogen disorders and
emicizumab in haemophilia A.
We hope you enjoy reading National Haemophilia!
READ NATIONAL HAEMOPHILIA