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No 226 June 2024

National Haemophilia No 226 June 2024

WFH 2024 World Congress and the EAHAD Congress brought together delegates and experts in exciting forums to debate current and emerging issues in bleeding disorders. In this feature issue we hear reports and reflections from Australian delegates. And we see how landmarks lit up red around Australia on World Haemophilia Day to raise awareness about all bleeding disorders.

In this issue

  • National Haemophilia Journal

New AHCDO ABDR Research Fellow

  • 26 June 2024
AHCDO is pleased to welcome Ashley Fletcher as the new Australian Bleeding Disorders Registry (ABDR) Research Fellow.
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  • National Haemophilia Journal

From the President

  • Gavin Finkelstein -
  • 26 June 2024
I was privileged to attend the 2024 WFH World Congress. It was exciting to hear updates on what’s happening worldwide with women, clinical trials, gene therapy.
Read more
  • National Haemophilia Journal

UK Infected Blood Inquiry and Australia

  • 26 June 2024
What does the UK Infected Blood Inquiry mean for Australia? And what has Haemophilia Foundation Australia been doing about hepatitis C and advocacy?
Read more
  • National Haemophilia Journal

World Hepatitis Day 2024

  • 26 June 2024
On 28 July 2024 the international community will come together on World Hepatitis Day to step up efforts to eliminate viral hepatitis, with the theme It’s time for action.
Read more
  • National Haemophilia Journal

Gene therapy webinar

  • 26 June 2024
Dr Michiel Coppens joined us at HFA for an interview about gene therapy, answering questions from the community. Watch the video or read the transcript.
Read more
  • National Haemophilia Journal

Research studies – why participate?

  • 26 June 2024
With new treatments being assessed by government in Australia, you will be invited to participate in a few research studies. Why participate?
Read more
  • National Haemophilia Journal

Have you done the PROBE survey yet?

  • 26 June 2024
Participate in the PROBE Australia Study today and contribute to HFA's real-world evidence on haemophilia!
Read more
  • National Haemophilia Journal

World Haemophilia Day 2024

  • 26 June 2024
On 17 April landmarks around Australia lit up red to celebrate World Haemophilia Day, with the theme of Recognising all bleeding disorders.
Read more
  • National Haemophilia Journal

WFH 2024 World Congress

  • 26 June 2024
Australia was well-represented at the 2024 WFH Congress as speakers, poster presenters and as delegates. We hear reports and reflections from delegates.
Read more
  • National Haemophilia Journal

Representing HFA globally

  • Natashia Coco -
  • 26 June 2024
It was an honour for me to represent Australia at the WFH General Assembly, the annual meeting for all National Member Organisations (NMOs).
Read more
  • National Haemophilia Journal

Congress – a Foundation perspective

  • Gavin Finkelstein -
  • 26 June 2024
Haemophilia Foundation Australia President Gavin Finkelstein spoke with HFA about his experiences at the WFH 2024 World Congress.
Read more
  • National Haemophilia Journal

Pain in children with bleeding disorders

  • Daisy Regan -
  • 26 June 2024
Why are health professionals less likely to ask paediatric patients if they are experiencing pain at clinic reviews, compared to their adult patients?
Read more
  • National Haemophilia Journal

Ultrasound, bleeds, joints and sport

  • Bianca Da Silva -
  • 26 June 2024
The Professional Development Day at WFH 2024 World Congress was an ultrasound workshop, teaching how to detect the presence or absence of a bleed.
Read more
  • National Haemophilia Journal

Body art – tattoos and piercings

  • Jaime Chase -
  • 26 June 2024
At the Nurses’ Workshop at WFH 2024 World Congress, Scott gave a fascinating presentation about the patient experience of body art with severe haemophilia .
Read more
  • National Haemophilia Journal

Exploring haemophilia prophylaxis

  • Yuhsuan Lin (Yoshi) -
  • 26 June 2024
One of the most memorable sessions at WFH 2024 World Congress focused on the optimal dosage of prophylaxis treatment for individuals with haemophilia
Read more
  • National Haemophilia Journal

Women: caregivers to patients to advocates

  • Lara Nicholson -
  • 26 June 2024
This session discussed the work of women advocates to overcome the general and longstanding misunderstanding that women are only carriers and do not have bleeding disorders.
Read more
  • National Haemophilia Journal

Women and girls with bleeding disorders

  • Suzanne O'Callaghan -
  • 26 June 2024
Sessions on women and girls at the WFH 2024 World Congress had a strong message that it’s time for action on female-specific research, treatment and care.
Read more
  • National Haemophilia Journal

New and emerging issues in physiotherapy

  • Abi Polus -
  • 26 June 2024
With the new treatments I am seeing people with bleeding disorders in the haemophilia clinic and on the hospital ward who are having a different presentation of bleeding to what we had traditionally seen.
Read more
  • National Haemophilia Journal

New developments in haemophilia nursing

  • Megan Walsh -
  • 26 June 2024
The EAHAD Congress was a stimulating forum to discuss new issues in haemophilia nursing - eg, bleeds with new therapies, women and mild haemophilia.
Read more
  • National Haemophilia Journal

AHCDO research

  • Caitlin Rice -
  • 26 June 2024
Caitlin Rice is undertaking research projects on VWD type 3 and acquired haemophilia A for AHCDO and will use ABDR data for these projects.
Read more
  • National Haemophilia Journal

Catching up with youth

  • Declan and Bailey -
  • 26 June 2024
Declan and Bailey talk about the HFV Youth Day Out event at a gaming bar and what made it fun.
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  • National Haemophilia Journal

Bleeding Disorders Awareness Month

  • 26 June 2024
Get ready for Bleeding Disorders Awareness Month in October 2024!
Read more
  • National Haemophilia Journal

Calendar

  • 26 June 2024

World Hepatitis Day28 July 2024 Bleeding Disorders Awareness MonthOctober 2024 World Haemophilia Day17 April 2025

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Haemophilia Foundation Australia

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