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No 224 December 2023

National Haemophilia Journal December 2023

The 2023 Conference was an exciting exploration of what’s new in bleeding disorders and in this issue we share the reports – new haemophilia therapies, including gene therapy, VWD, women and girls, mild haemophilia, getting older and youth. There are great photos from our community celebrating Bleeding Disorders Awareness Month. We reflect on HIV today for World AIDS Day. And we say goodbye to our Executive Director, Sharon Caris.

In this issue

  • National Haemophilia Journal

Season’s greetings

  • 11 December 2023

The HFA Council and staff wish you a happy and safe festive season. Thank you for your support during 2023…

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  • National Haemophilia Journal

Calendar

  • 11 December 2023

World AIDS Day1 December 2023 World Haemophilia Day17 April 2024 WFH 2024 World CongressMadrid, Spain21-24 April 2024

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  • National Haemophilia Journal

PROBE Australia Study

  • 11 December 2023

Have you done the PROBE survey yet? The 2023 round of the PROBE Australia Study has now commenced! You can…

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  • National Haemophilia Journal

Youth at the Conference

  • Adam, Alan and Cassie -
  • 11 December 2023

The Melbourne Conference in August 2023 was the first time the national Conference had been held in person since the…

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  • National Haemophilia Journal

Making career choices

  • Jane Portnoy -
  • 11 December 2023

JANE PORTNOY Jane Portnoy is Social Worker – Haemophilia & Other Inherited Bleeding Disorders at the Ronald Sawers Haemophilia Centre,…

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  • National Haemophilia Journal

Getting older

  • Nicoletta Crollini -
  • 11 December 2023

NICOLETTA CROLLINI Nicoletta Crollini is Haemophilia Social Worker at the Royal Prince Alfred Hospital, Sydney, NSW Getting olderChair ~ Suzanne…

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  • National Haemophilia Journal

Pain

  • Emma Wells -
  • 11 December 2023

EMMA WELLS Emma Wells is Paediatric Social Worker – Haematology, John Hunter Children’s Hospital, Newcastle NSW PainChair ~ Jonathan SpencerBetter…

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  • National Haemophilia Journal

Identifying bleeds

  • Stephen Matthews -
  • 11 December 2023

STEPHEN MATTHEWS Stephen Matthews is Clinical Nurse Consultant Haemophilia at the Royal Prince Alfred Hospital, Sydney, NSW Is it a…

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  • National Haemophilia Journal

Rare bleeding disorders

  • Stephen Matthews -
  • 11 December 2023

STEPHEN MATTHEWS Stephen Matthews is Clinical Nurse Consultant Haemophilia at the Royal Prince Alfred Hospital, Sydney, NSW Rare bleeding disordersChair…

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  • National Haemophilia Journal

Mild haemophilia

  • Suzanne O'Callaghan and Natalie Karlovic -
  • 11 December 2023

Plenary – Managing mild haemophilia Chair ~ Dr Heather TappPersonal perspective from a young adult and his dad ~ Louis and…

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  • National Haemophilia Journal

Living with type 1 VWD

  • Susie -
  • 11 December 2023

Susie’s story Susie shared her personal story of living with type 1 VWD at the 21st Australian Conference on haemophilia,…

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  • National Haemophilia Journal

Von Willebrand disease

  • Suzanne O'Callaghan -
  • 11 December 2023

SUZANNE O’CALLAGHAN Suzanne O’Callaghan is HFA Policy Research and Education Manager VWDChair ~ Dr Chee Wee TanPersonal story ~Adam Personal story…

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  • National Haemophilia Journal

Pregnancy and childbirth

  • Stephen Matthews -
  • 11 December 2023

STEPHEN MATTHEWS Stephen Matthews is Clinical Nurse Consultant Haemophilia at the Royal Prince Alfred Hospital, Sydney, NSW Pregnancy, childbirth and…

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  • National Haemophilia Journal

The challenges of living with VWD

  • Shauna -
  • 11 December 2023

Shauna’s story Shauna shared her personal story of managing quality of life issues while living with Type 3 VWD at…

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  • National Haemophilia Journal

Bleeding Disorders Awareness Month in pictures

  • 11 December 2023
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  • National Haemophilia Journal

Bleeding Disorders Awareness Month 2023

  • 11 December 2023

Bleeding Disorders Awareness Month spanned the entirety of October 2023, and saw individuals, families, Haemophilia Treatment Centres, Haemophilia Foundations and…

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  • National Haemophilia Journal

Women and girls with bleeding disorders

  • Suzanne O'Callaghan and Alex Klever -
  • 11 December 2023

Plenary – Women and girls with bleeding disordersChair ~ Dr Meredith WigginsPersonal perspectives on the challenges and issues of living…

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  • National Haemophilia Journal

New haemophilia therapies

  • Alex Klever and Natalie Karlovic -
  • 11 December 2023

ALEX KLEVER Alex Klever is Clinical Nurse Consultant – Haemophilia at the Queensland Haemophilia Centre, Royal Brisbane & Women’s Hospital…

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  • National Haemophilia Journal

Hopes for the future

  • Claire -
  • 11 December 2023
Claire shared her personal story as a parent of young boys with haemophilia at the 21st Australian Conference on haemophilia, VWD and rare bleeding disorders. This is a transcript of her presentation.
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  • National Haemophilia Journal

Conference reflections

  • 11 December 2023

A FOUNDATION PERSPECTIVE Haemophilia Foundation Australia President Gavin Finkelstein spoke with HFA about the Conference and its impact from his…

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  • National Haemophilia Journal

2023 Conference

  • 11 December 2023

The 21st Australian Conference on haemophilia, VWD and rare bleeding disorders was held on 24 to 26 August 2023 in…

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  • National Haemophilia Journal

World AIDS Day

  • 11 December 2023

World AIDS Day is marked globally on 1 December. In 2023 the national theme for World AIDS Day is Inclusion….

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  • National Haemophilia Journal

2023 HFA Awards

  • 11 December 2023

The HFA Awards are an important opportunity to acknowledge the exceptional service and commitment of individuals in our community. Our…

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  • National Haemophilia Journal

Message from Sharon

  • 11 December 2023

“It has been an honour to work with HFA for 22 years.” “I have loved every minute; and the ‘job’…

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  • National Haemophilia Journal

From the President

  • Gavin Finkelstein -
  • 11 December 2023

GAVIN FINKELSTEIN President, Haemophilia Foundation Australia AUSTRALIAN CONFERENCE It was great to see a lot of our community – new…

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  • National Haemophilia Journal

New haemophilia booklet

  • 11 December 2023

The new HFA Haemophilia booklet is now available. The 2023 edition has been revised completely to take new haemophilia treatments…

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Haemophilia Foundation Australia

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