No 225 March 2024

National Haemophilia cover with Wrest Point casino lit up red

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 Rare Disease Day with two personal stories about living with Glanzmann thrombasthenia. We also explore women and peer support, managing FIFO with a bleeding disorder, mental health, and the experiences and hopes of Ben, a youth leader.

In this issue

The 2024 funding round for the Damon Courtenay Memorial Endowment Fund (DCMEF) is now open.
Another exciting year ahead and the HFA staff have hit the ground running in 2024.
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.
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.
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 community members who live with a rare bleeding disorder.
Glanzmann thrombasthenia is a very rare hereditary platelet function disorder that affects the way that platelets work in the body.
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.
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.
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.
The Australian Haemophilia Centre Directors' Organisation (AHCDO) has a new committee and had a successful education day discussing women, VWD and gene therapy.
As a FIFO, what do you need to think about to manage your bleeding disorder when you are onsite?
What mental health support services are available and how do you access them?
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.
Over the past year the HFA team, together with our website developer, Heartburst, have been designing and building a new website for Check it out - and let us know if you find anything broken!
Ben talks to HFA about his experiences and hopes for the Blue Shirts youth leadership program.
What events are coming up on the bleeding disorders calendar?

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