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No 219 September 2022

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 and being cured.

In this issue

  • National Haemophilia Journal

HFA video challenge

  • 13 September 2022

HFA is now on TikTok!   To celebrate, we're running a video challenge and we want you and your family…

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  • National Haemophilia Journal

From the President

  • Gavin Finkelstein -
  • 13 September 2022

GAVIN FINKELSTEIN President, Haemophilia Foundation Australia Here we are already in September, and it’s time to be preparing our annual…

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  • National Haemophilia Journal

Bleeding Disorders Awareness Month

  • 13 September 2022

As you may know, this year in October we will have a whole month to raise awareness about bleeding disorders. …

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  • National Haemophilia Journal

WFH 2022 World Congress

  • 13 September 2022

The WFH 2022 World Congress was held by the World Federation of Hemophilia in Montreal, Canada on 8-9 May 2022…

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  • National Haemophilia Journal

WFH national haemophilia organisation training

  • Shauna Adams -
  • 13 September 2022

Shauna Adams is HFACT Secretary and an Australian community member with VWD. Suzanne O'Callaghan is HFA Policy Research and Education…

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  • National Haemophilia Journal

Moving on from COVID-19

  • Jaime Chase -
  • 13 September 2022

JAIME CHASE Jaime Chase is Haematology Clinical Nurse Specialist at the John Hunter Children’s Hospital, Newcastle, NSW Plenary – Moving…

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  • National Haemophilia Journal

Virtual care

  • Aisha Barton-Ross -
  • 13 September 2022

AISHA BARTON-ROSS Aisha Barton-Ross is a physiotherapist with the haemophilia team at the Royal Children’s Hospital, Melbourne The COVID-19 pandemic…

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  • National Haemophilia Journal

Novel haemophilia therapies

  • Robyn Shoemark -
  • 13 September 2022

Living in the new world of novel haemophilia therapies ROBYN SHOEMARK Robyn Shoemark is Clinical Nurse Consultant Haemophilia/Haematology at the…

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  • National Haemophilia Journal

Gene therapy

  • Robyn Shoemark and Suzanne O'Callaghan -
  • 13 September 2022

Gene therapy for haemophilia has been in advanced clinical trials for some years now and this Congress was a timely…

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  • National Haemophilia Journal

Women and girls with haemophilia

  • Robyn Shoemark -
  • 13 September 2022

ROBYN SHOEMARK Robyn Shoemark is Clinical Nurse Consultant Haemophilia/Haematology at the Kids Factor Zone, The Children’s Hospital at Westmead, Sydney,…

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  • National Haemophilia Journal

Von Willebrand disease

  • Suzanne O'Callaghan and Robyn Shoemark -
  • 13 September 2022

SUZANNE O'CALLAGHAN Suzanne O'Callaghan is HFA Policy Research and Education Manager Plenary (Arosenius Lecture) – Towards novel treatment options in…

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  • National Haemophilia Journal

AHCDO update – congenital fibrinogen disorders

  • Andrea Johannessen -
  • 13 September 2022

AHCDO John Lloyd Clinical Excellence Grant ANDREA JOHANNESSEN Dr Andrea Johannessen is AHCDO Executive Officer The Australian Haemophilia Centre Directors'…

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  • National Haemophilia Journal

Prophylaxis and tolerisation in haemophilia A

  • Sumit Parikh -
  • 13 September 2022

SUMIT PARIKH Sumit Parikh is the AHCDO ABDR Senior Research Fellow The International Society for Thrombosis and Haemostasis (ISTH) reconvened…

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  • National Haemophilia Journal

World Hepatitis Day 2022

  • 13 September 2022

World Hepatitis Day is marked globally on 28 July. This is part of a worldwide campaign to eliminate viral hepatitis…

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  • National Haemophilia Journal

Clearing hep C as a child – John’s story

  • 13 September 2022

*John is not his real name For most people who were exposed to hepatitis C through their treatment products, the…

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  • National Haemophilia Journal

Turning liver health around – Jake’s story

  • 13 September 2022

Turning liver health around after hep C – Jake’s story* *Jake is not his real name ‘Now that my liver…

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  • National Haemophilia Journal

Youth News – Becoming a youth leader

  • Chris -
  • 13 September 2022

Chris spoke to HFA about being a youth leader with his local Haemophilia Foundation, camps, catch-ups and life with haemophilia…

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  • National Haemophilia Journal

Calendar

  • 13 September 2022

Bleeding Disorders Awareness Month October 2022 World AIDS Day 1 December 2022 World Haemophilia Day 17 April 2023

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