The March 2023 National Haemophilia is now available to read on our website. Catch up on the latest information and personal stories from our community
- Haemophilia – what's possible?
- Tips for young people with a bleeding disorder
- Rare Disease Day
- Parliamentary event recap (in President's Report)
- Living life actively with Type 3 VWD
- Youth News: Willem's story – Part 2
What's possible in haemophilia treatment?
The 16th Annual Congress of the European Association for Haemophilia and Allied Disorders (EAHAD) was held in Manchester, UK between 7 and 10 February 2023. Taking as its focus ‘Knowledge and treatment advances require us all to re-examine what’s possible’, the Congress explored the implications for both people with bleeding disorders and the Haemophilia Treatment Centre teams who manage their treatment and care.
In this issue of National Haemophilia, Senior Musculoskeletal Physiotherapist, Alison Morris explores how advances in knowledge and treatment are changing how physiotherapy is being used to support people with bleeding disorders. Read the article.
New haemophilia treatments are also impacting on what people with haemophilia expect in relation to their quality of life. Earlier this year we conducted a survey to discover what our community would like to know about new haemophilia treatments and preferred treatment outcomes, now and in the future. Thank you to all who completed the survey – HFA will use this information to develop fact sheets on new haemophilia treatments. Read the report.
Events and Advocacy
In February, HFA representatives were in Canberra to promote awareness of new and emerging therapies at an education event for Federal Members of Parliament. Dr Liane Khoo, Dan Credazzi and Jay all shared their knowledge and experience. Read the President's Report to learn more.
We also recognised Rare Disease Day, sharing stories from our community and acknowledging the challenges for those people who live with a rare disorder. Learn more and read Adam's story.
Coming up on 17 April we have World Haemophilia Day, an opportunity for us to increase awareness of haemophilia, VWD and other inherited bleeding disorders. Already over 50 different locations around Australia have commited to 'light it up red' on World Haemophilia Day – learn more and see the list of locations.
And on 24-26 August the 21st Australian Conference on haemophilia, VWD and rare bleeding disorders will be held face to face at Pullman on the Park in Melbourne. Find out more.
Being a young person with a bleeding disorder
This month we included a mix of content relevant to teenagers and young people with bleeding disorders. Jaime Chase talks about what it means to gain independence, and shares tips on how you can be prepared to experience new things and take risks safely.
We give advice on choosing or changing your career path in a recap from a webinar with Penny McCarthy and Craig Eastwood from Jobs Victoria Career Counsellors Service.
Willem, who is 20 years old and has haemophilia A, shares the second part of his story.
In this issue of National Haemophilia we also invite you to have your say about public transport accessibility as part of the government's 2022 Review of the Transport Standards.