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Shauna – sharing her life experience living with a bleeding disorder

Growing up with a bleeding disorder, Personal stories, Von Willebrand disease, Women & girls, Young people, Living with VWD, Youth, Woman, Young people, Personal stories

Tell us a little about your bleeding disorder I have severe Type 3 von Willebrand disease. Essentially my blood doesn’t clot as it should, and because a deficiency of von Willebrand factor results in a...

PROBE Australia Study Update

HFA & Foundation news, Research, PROBE Australia Study, News

We are building evidence about the needs of men and women affected by haemophilia in Australia.

Welcome to our new website

HFA & Foundation news

HFA has a new website! You’ll find all of the same great content and information, but in brand new packaging. Over the past 12 months we’ve been working hard with the team at Heartburst to...

Emicizumab in haemophilia A

Research, Treatment & care, Hemlibra, Articles

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...

Haemophilia: men and babies

Parents & families, Women & girls, haemophilia, inheritance, Families, Men, Articles

KARA CORDINER, PENNY MCCARTHY AND MEGAN WALSH Kara Cordiner, Penny McCarthy and Megan Walsh are Clinical Nurse Consultants at the Ronald Sawers Haemophilia Centre, The Alfred hospital, Melbourne.  When men with haemophilia call us at...

Mouth bleeds in bleeding disorders

Treatment & care, dental care, mouth bleeds, Articles

GRAINNE DUNNE Grainne Dunne is Clinical Nurse Consultant, Haemophilia, at Sydney Children’s Hospital Our mouth is a most wonderful and interesting part of our body. It’s the first step in breaking down food to allow...

Youth News – My amazing travel adventure

Personal stories, Recreation & lifestyle, Travel, Young people, travel, Youth, Young people, Personal stories

Jack talked to HFA about travelling overseas and managing his haemophilia for some amazing trips! My name’s Jack. I am 22 years old and I have severe haemophilia A. Where did you go on your...

PROBE Australia Study

Research, haemophilia, PROBE Australia Study, General, Articles

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...

Bleeding Disorders Awareness Month 2023

Events & awareness, HFA & Foundation news, Bleeding Disorders Awareness Month, General, Articles

Once again in October 2023 we will have a whole month to raise awareness about bleeding disorders.  Visit the Bleeding Disorders Awareness Month section The 2023 theme for Bleeding Disorders Awareness Month is WORKING TOGETHER. ...

World Hepatitis Day 2023

Hepatitis C & HIV, Hepatitis C, World Hepatitis Day, Getting older, Articles

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...

Finally cured of hep C – Alex’s story

Hepatitis C & HIV, Personal stories, alcohol, Hepatitis C, liver health, General, Articles, Personal Story

*Alex is not his real name ‘I felt like I had won a million dollars.’ What is it like to be cured of hepatitis C after decades of living with the virus? Alex spoke with...

WFH Shared Decision-Making Tool

Treatment & care, shared decision-making, Articles

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)...

Congenital fibrinogen disorders

Rare bleeding disorders, rare clotting factor deficiencies, Articles

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...

From the President

Advocacy, HFA & Foundation news, funding, representation, General, Articles

GAVIN FINKELSTEIN President, Haemophilia Foundation Australia  AUSTRALIAN CONFERENCE As we prepare this September issue of National Haemophilia, HFA staff and the Program Committee are also finalising the program and logistics for the national Conference. Conference...

Aged Care Services

Getting older, aged care, ageing, Getting older, Articles

Navigating the different Aged Care services can be confusing. In the new HFA Getting Older Hub section on Aged Care services and homes, we walk through types of services and care, special issues for people...

Bleeding Disorders Awareness Month 2023

HFA & Foundation news

Bleeding Disorders Awareness Month (BDAM) has arrived! For all of October, individuals, families, Haemophilia Foundations and other organisations will take part in a campaign and activities to raise awareness about haemophilia, von Willebrand disease and related...

No 223 September 2023

In this issue we explore some hot topics: how shared decision-making works with new treatments, inheritance FAQs for men with haemophilia, liver health after a hep C cure and mouth bleeds. And we finish with...

World Hepatitis Day 2023

HFA & Foundation news

Today is World Hepatitis Day. This is a day when we come together globally to take action on viral hepatitis. We share the message of Hep can’t wait!, reminding us that hepatitis C remains an...

World Hepatitis Day 2016

HFA & Foundation news

Today is World Hepatitis Day. In 2016 revolutionary new hep C treatments are now available.  What is so exciting about the new hep C treatments for people with bleeding disorders?  Watch our video to find...

MyABDR Survey

HFA & Foundation news

Complete the MyABDR survey and enter the draws for great prizes!

Living life actively with VWD

Personal stories, Rare bleeding disorders, Von Willebrand disease, Living with VWD, Rare Disease Day, General, Getting older, Men, Personal stories

Adam is in his late 40s and has Type 3 von Willebrand disease (VWD), which is a severe form. He has almost no von Willebrand factor in his blood and his factor VIII (8) levels...

June 2023 National Haemophilia now available

HFA & Foundation news

The June 2023 National Haemophilia is now available to read on our website. With the Australian conference coming up, issues about treatment and care are on the agenda. We have a report from the WFH...

Men’s Health Week 2023

HFA & Foundation news

International Men's Health Week runs each year in the middle of June. It is an important opportunity to highlight the importance of men's health, and to promote and support the health and wellbeing of men and boys...

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