The March 2024 National Haemophilia is now available to read online and in print. In this issue we feature:
- World Haemophilia Day (14 April 2024)
- Rare Disease Day (29 February 2024)
- Glanzmann thrombasthenia
- Women and peer support
- FIFO workers
- Youth taking on the future: Ben’s story
Thank you so much to the community members and health professionals who contribute to National Haemophilia. Your insights and expertise are invaluable.
Raising Awareness
In February we recognised Rare Disease Day. Each year, this day is provides an opportunity for us to raise awarenss and generate change for people with rare diseases. This year we highlighted a very rare hereditary platelet function disorder: Glanzmann thrombasthenia (GT). In National Haemophilia we walk you through this rare condition, and share stories about being diagnosed and living with GT. Read the article.
Another opportunity to raise awareness is just around the corner, with World Haemophilia Day coming up on 17 April. This year’s theme is ‘Recognising all bleeding disorders’ and provides us with an opportuninity to share stories from our community about living with many different bleeding disorders. Read the article.
Women and peer support
How do you encourage women to take some time out to focus on their own needs? Lauren Green, Haemophilia Foundation Queensland (HFQ) Manager, reflects on her own journey and how HFQ has been working to deal with the needs of women and girls. In her article, ‘Women and Peer Support’ she describes how valuable it can be for women to have a comfortable and relaxed space to open up and connect with other women in the community. Read the article.
FIFO and bleeding disorders
In this issue of National Haemophilia, Beryl Zeissink, Clinical Nurse Consultant – Haemophilia, shares advice for FIFO (fly in fly out) workers with bleeding disorders, which she has put together with some input from patients who are FIFO workers and other HTCs. She talks about disclosing when having a health assessment, work site tips, and what to do if you have a bleed, injury or serious accident. Read the article.
Mental health
Starting the new year can be a time of reflection. Nicoletta Crollini, Haemophilia Social Worker, reminds us that the bleeding disorder community is not exempt from dealing with mental health issues. In this issue of National Haemophilia she provides guidance on what mental health supports are available, and how to go about accessing them. Read the article.
Youth taking on the future
Ben Ingliss has been very involved in the Haemophilia Foundation Victoria (HFV) ‘Blue Shirts’ youth leadership program for many years and talked to HFA about his experiences and hopes for the program. He explains how the Blue Shirts began, what they get up to, and why the program is so important. Read the article.
PROBE Australia Study
The 2023-24 round of the PROBE Australia Study is still open.This study provides important data to HFA about the impact of haemophilia on Australians. How have things changed since new treatments became available? This data will be an evidence base to support HFA advocacy on new treatments for the Australian bleeding disorders community – and will also help us understand the different experiences of living with haemophilia, for example, women, people with mild haemophilia or inhibitors, getting older.
The survey is open to both men and women affected by haemophilia and people without a bleeding disorder (comparison group). Read the article.
We hope you enjoy reading National Haemophilia!
