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Shauna – sharing her life experience living with a bleeding disorder

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

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...

About Glanzmann thrombasthenia

Articles, General, Glanzmann thrombasthenia, Inherited platelet function disorders, Rare bleeding disorders

Glanzmann thrombasthenia is a very rare hereditary platelet function disorder that affects the way that platelets work in the body.

AHCDO update

AHCDO, Articles, General, Treatment & care

The Australian Haemophilia Centre Directors’ Organisation (AHCDO) has a new committee and had a successful education day discussing women, VWD and gene therapy.

Calendar

What events are coming up on the bleeding disorders calendar?

Changes at HFA

Articles, General, HFA, HFA & Foundation news

The team has changed recently at HFA. Natashia Coco has taken on the role of Executive Director (Acting) and we welcome Pauline Hill as our Digital Communications Manager.

Damon Courtenay Memorial Endowment Fund

Articles, Awards, Damon Courtenay Memorial Endowment Fund (DCMEF), General

The 2024 funding round for the Damon Courtenay Memorial Endowment Fund (DCMEF) is now open.

FIFO and bleeding disorders

Articles, disclosure, employers, Employment, General, Life & work & study, Men, self-management, Telling others, Treatment & care, Woman, Young people

As a FIFO, what do you need to think about to manage your bleeding disorder when you are onsite?

From the President

Advocacy, Articles, General, HFA & Foundation news, representation, WFH World Congress, World Haemophilia Day

Another exciting year ahead and the HFA staff have hit the ground running in 2024.

Growing up with Glanzmann thrombasthenia

Articles, General, Glanzmann thrombasthenia, Inherited platelet function disorders, Parents, partners & carers, Rare bleeding disorders, Woman, Women & girls

Elizabeth’s teenage daughter Grace has Glanzmann thrombasthenia. Elizabeth talks about what it was like to find that your child has a very rare bleeding disorder and their family experiences as Grace grows up.

Living with Glanzmann thrombasthenia

Articles, General, Glanzmann thrombasthenia, Inherited platelet function disorders, Personal stories, Rare bleeding disorders, Woman, Women & girls

Allison was diagnosed with Glanzmann thrombasthenia at birth. She talked to HFA about her experiences and what she has learned from living with this very rare bleeding disorder.

Mental health and support

Articles, Families, General, Men, mental health, Mental wellbeing, Parents, partners & carers, support, Woman, Young people

What mental health support services are available and how do you access them?

Rare Disease Day 2024

Articles, General, Rare bleeding disorders, Rare Disease Day

In 2024 Rare Disease Day is celebrated worldwide on 29 February to raise awareness and generate change for people with rare diseases. It is an opportunity to share personal stories and acknowledge the challenges for our...

Why is PROBE important?

Articles, Families, General, Getting older, Haemophilia, Men, outcome measures, Parents, partners & carers, patient experience, quality of life, Research, Woman, Young people

The PROBE Australia Study is how HFA is building evidence about the needs of men and women affected by haemophilia in Australia. Here’s how you can help.

Women and peer support

Articles, bleeding disorders, Connection & Support, General, peer support, Woman, Women, Women & girls

How do you encourage women to take some time out to focus on their own needs? Lauren talks about peer support activities for women at Haemophilia Foundation Queensland.

World Haemophilia Day 2024

Articles, Events & awareness, General, World Haemophilia Day, World Haemophilia Day

Every year on 17 April World Haemophilia Day is recognised worldwide to increase awareness of haemophilia, von Willebrand disease and other inherited bleeding disorders. Find out how it will be celebrated in Australia.

Youth taking on the future

Articles, Boys, Camps & workshops, Connection & Support, General, Girls, Leadership & mentoring, Young people, Young people, youth leadership

Ben talks to HFA about his experiences and hopes for the Blue Shirts youth leadership program.

No 225 March 2024

On World Haemophilia Day in April we will light up red around Australia to raise awareness about the range of bleeding disorders. Some bleeding disorders can be very rare and in this issue we mark...

International Women’s Day 2024

HFA & Foundation news, International Women's Day, News, Women & girls

Today we celebrate the women in the bleeding disorders community – whether they’re women with bleeding disorders or mums, partners, daughters, sisters, nurses, doctors, social workers or counsellors, physios, researchers, or carers. Thank you for...

PROBE Australia Study Update

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

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

Welcome to our new website

HFA & Foundation news, 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

Articles, Hemlibra, Research, Treatment & care

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

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

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

Articles, dental care, mouth bleeds, Treatment & care

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...

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