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The Australian Haemophilia Centre Directors’ Organisation (AHCDO) has a new committee and had a successful education day discussing women, VWD and gene therapy.
The team has changed recently at HFA. Natashia Coco has taken on the role of Executive Director (Acting) and we welcome Pauline Hill as our Digital Communications Manager.
Another exciting year ahead and the HFA staff have hit the ground running in 2024.
In 2024 Rare Disease Day is celebrated worldwide on 29 February to raise awareness and generate change for people with rare diseases. It is an opportunity to share personal stories and acknowledge the challenges for our...
RADHA RAMANAN Dr Radha Ramanan is the current Australian Haemophilia Centre Directors’ Organisation (AHCDO) Research Fellow. Dr Radha Ramanan reports on one of her Australian Haemophilia Centre Directors’ Organisation (AHCDO) research projects. Funded access to...
The 2023 round of the PROBE Australia Study has now commenced! WHY IS THE PROBE STUDY IMPORTANT? What is the impact of haemophilia on Australians? What has changed since new treatments became available? How can...
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...
SUZANNE O’CALLAGHAN Suzanne O’Callaghan is HFA Policy Research and Education Manager In these times of new therapies, how does the global bleeding disorders community best approach treatment and care? The World Federation of Haemophilia (WFH)...
RADHA RAMANAN Dr Radha Ramanan is the current Australian Haemophilia Centre Directors’ Organisation (AHCDO) Research Fellow. Dr Radha Ramanan received the AHCDO John Lloyd Clinical Excellence Grant in 2022 for her research project titled Phenotypic...
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...
YU-HSUAN LIN (YOSHI) Yu-hsuan Lin (Yoshi) is Haemophilia Nurse Consultant, Haemophilia Treatment Network SA, at the Royal Adelaide Hospital, South Australia. WFH 2023 Comprehensive Care Summit: New Developments in Bleeding Disorders and MSK 10-12 May...
SUZANNE O’CALLAGHAN Suzanne O’Callaghan is HFA Policy Research and Education Manager What are your rights and responsibilities with superannuation and insurance if you have a bleeding disorder or carry the gene? In a recent HFA...
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. After a few years communicating and running our...
SUZANNE O'CALLAGHAN Suzanne O'Callaghan is HFA Policy Research and Education Manager What information does our community want about new haemophilia treatments? And for those who are affected, what would you like haemophilia treatment to achieve...
Rare Disease Day is celebrated worldwide on 28 February to raise awareness about the experience of people with rare diseases. It is working globally towards equity in social opportunity, healthcare and access to diagnosis and...
ALISON MORRIS Alison Morris is Senior Musculoskeletal Physiotherapist at the Haemophilia Treatment Centre at Perth Children’s Hospital, WA The 16th Annual Congress of the European Association for Haemophilia and Allied Disorders (EAHAD) was held in...
ANDREA JOHANNESSEN Dr Andrea Johannessen is AHCDO Executive Officer GENE THERAPY ROADMAP The Australian Haemophilia Centre Directors' Organisation (AHCDO) has developed the Gene Therapy Roadmap to provide a Clinical Implementation Plan that sets out AHCDO’s...
The WFH 2022 World Congress features in this issue, with reports on the very latest research about bleeding disorders and new treatments. We also hear personal stories from our community about hep C, liver health...
AHCDO John Lloyd Clinical Excellence Grant ANDREA JOHANNESSEN Dr Andrea Johannessen is AHCDO Executive Officer The Australian Haemophilia Centre Directors' Organisation (AHCDO) Executive Committee are pleased to announce that the successful application for the AHCDO...
Gene therapy for haemophilia has been in advanced clinical trials for some years now and this Congress was a timely forum to discuss and evaluate it critically. ROBYN SHOEMARK Robyn Shoemark is Clinical Nurse Consultant...
Living in the new world of novel haemophilia therapies ROBYN SHOEMARK Robyn Shoemark is Clinical Nurse Consultant Haemophilia/Haematology at the Kids Factor Zone, The Children’s Hospital at Westmead, Sydney, NSW Discussion about the impact of...
SUMIT PARIKH Sumit Parikh is the AHCDO ABDR Senior Research Fellow The International Society for Thrombosis and Haemostasis (ISTH) reconvened for their annual scientific meeting this year in July in London, UK. It was the...
AISHA BARTON-ROSS Aisha Barton-Ross is a physiotherapist with the haemophilia team at the Royal Children’s Hospital, Melbourne The COVID-19 pandemic has brought virtual care – both challenges and benefits – to the forefront of healthcare,...
SUZANNE O'CALLAGHAN Suzanne O'Callaghan is HFA Policy Research and Education Manager Plenary (Arosenius Lecture) – Towards novel treatment options in von Willebrand disease Speaker ~ Peter Lenting, Director of Research, French National Institute of Health...
Haemophilia Foundation Australia acknowledges the Traditional Owners and Custodians of Country throughout Australia, the land, waters and community where we walk, live, meet and work. We pay our respects to Elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples.
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