The December 2023 National Haemophilia is now available to read online and in print. In this bumper issue we feature:
- 2023 Conference reports and personal stories
- Bleeding Disorders Awareness Month
- World AIDS Day
- Farewell to Sharon Caris
- PROBE Australia Study
Thank you so much to the community members and health professionals who contribute to National Haemophilia. Your insights and expertise are invaluable.
2023 CONFERENCE REPORTS AND PERSONAL STORIES
The 21st Australian Conference on haemophilia, VWD and rare bleeding disorders was held on 24 to 26 August 2023 in Melbourne and saw over 210 delegates come together – people with bleeding disorders and their families and carers, health professionals, policy makers and industry. It was wonderful to be face-to-face again.
In this issue of National Haemophilia we share information and reflections from the presenters and community members who attended. We explore new haemophilia therapies (including gene therapy), women and girls with bleeding disorders, VWD and living with VWD, mild haemophilia, pain and getting older. We also hear from Adam, Alan and Cassie as they report on youth at the conference.
BLEEDING DISORDERS AWARENESS MONTH
Bleeding Disorders Awareness Month spanned the entirety of October 2023, and saw individuals, families, Haemophilia Treatment Centres, Haemophilia Foundations and other organisations all helping to raise awareness about haemophilia, von Willebrand disease and other bleeding disorders around Australia.
See how the community got involved by sharing personal stories, participating in the colour-in competition, and check out the photos from all of the different events held around the country. Thank you to everyone in the community for joining in and helping to make a difference.
WORLD AIDS DAY
World AIDS Day is marked globally on 1 December. In 2023 the national theme for World AIDS Day is Inclusion. Respect. Equity. Part of our everyday life as a community is being mindful of our community members living with HIV, of demonstrating our support for them and commemorating those with HIV who have passed away. In the December National Haemophilia, we feature messages from some of our community members living with HIV who generously shared their thoughts. Learn more.
FAREWELL TO SHARON CARIS
After 22 years of service, on the first of November, 2023, we said farewell to our Executive Director, Sharon Caris. Since Sharon took on the role in 2001, she has touched many of us, being instrumental in welcoming, informing and educating, and advocating for the Australian bleeding disorders community.
“I have loved every minute; and the ‘job’ has been a real privilege for me – the community is wonderful.”
We invite everyone to write a message to Sharon letting her know how much she will be missed, and remembering the outstanding work she has done. We have provided self-addressed postcards with each print copy of National Haemophilia for people to write on. Alternatively you can send your message digitally. The messages will be private, and we will ensure Sharon receives all of them.
We are pleased to share that Natashia Coco has stepped into the role of Executive Director (acting).
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.