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

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

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

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

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

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

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

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

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

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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