The June 2023 National Haemophilia is now available to read online and in print. With the Australian conference coming up, issues about treatment and care are on the agenda. In this issue we feature:
- A report from the WFH 2023 Comprehensive Care Summit
- What do ABDR Data Managers do?
- 2023 Conference
- Lighting up red around Australia
- Your rights: superannuation and insurance
- New simple haemophilia testing guide
- Youth News: A message to your younger self
Thank you so much to the community members and health professionals who contribute to National Haemophilia. Your expertise and insight are invaluable.
The 21st Australian Conference on Haemophilia, VWD & Rare Bleeding Disorders will be held face-to-face at the Pullman on the Park, Melbourne, 24-26 August 2023.
Our conferences bring together people with bleeding disorders and their families and carers, as well as health professionals, policy makers and industry. It is a great opportunity to learn, discuss key issues and plan for the future.
In this issue of National Haemophilia we announce our keynote speaker, Dr Glenn Pierce, share details on what will be covered in the program, and remind you that community funding is available to help community members cover their expenses to attend the Conference. Learn more.
World Haemophilia Day
Every year on 17 April for World Haemophilia Day the bleeding disorders community worldwide comes together to increase awareness of haemophilia, von Willebrand disease and other inherited bleeding disorders.
We loved seeing everyone celebrating World Haemophilia Day. Take a look in National Haemophilia to see photos of our community members and some of the many landmarks throughout Australia that lit up red for the occasion.
Taking care of your ABDR data
What do ABDR Data Managers do? Probably more than you realise! In this issue of National Haemophilia ABDR Data managers Julia, Marina, Linda and Deirdre spoke to HFA about their role with Australian Bleeding Disorders Registry (ABDR) data – and had a lot to say about why the ABDR and MyABDR are an important part of the life of the patient with a bleeding disorder.
‘The ABDR tells the story of a patient, their bleeds and their treatment over their lifetime.’
Recording accurate and consistent information in the Australian Bleeding Disorders Registry is crucial to patient treatment care and Data Managers work as part of Haemophilia Treatment Centre (HTC) teams to ensure this takes place nationwide. Read the article to learn more about this valuable role.
WFH 2023 Comprehensive Care Summit
Yu-hsuan Lin (Yoshi) is Haemophilia Nurse Consultant, Haemophilia Treatment Network SA, at the Royal Adelaide Hospital, South Australia. In National Haemophilia, she shares her experience attending the WFH 2023 Comprehensive Care Summit, diving into the sessions covering ageing, gene therapy and the current challenges in caring for patients with bleeding disorders, particularly with new haemophilia therapies. Read the article here.
This issue of National Haemophilia also dives into our new simple haemophilia testing guide, gives valuable advice on your rights: superannuation and insurance, and shares messages from our community for your younger self.
We hope you enjoy reading National Haemophilia!