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Did you participate in World Haemophilia Day? This month we share pics of all the people and places who went red to help raise awareness for haemophilia and other bleeding disorders.
We also have a sneak peak of what we got up to at WFH World Congress in Malaysia (over 30 Aussies! You did us proud) and share photos from this huge event.
Jo Cameron from the National Blood Authority (NBA) walks us through who they are and what they do, and why recording your treatment in MyABDR is so valuable.
And we share Michelle’s story about her journey to diagnosis – spoilers, it wasn’t easy.
Finally, be sure to scroll to the end for a list of upcoming events (there are heaps!) happening across Australia.
As always, thanks for reading.
World Haemophilia Day in Photos
April 17 was World Haemophilia Day! It was amazing seeing all the buildings around Australia light up red – and how the community got involved.
Thank you so much to everyone who participated, helping to raise awareness, dressing in red, and in one case making your own light it up red landmark! We loved seeing all your photos. If anyone has pics that they haven’t sent through to us – please do so. They will be featured in the June issue of National Haemophilia.
WFH World Congress 2026
WFH World Congress visited Kuala Lumpur, Malaysia from 19-22 April. With over 30 Australians there (we kept finding more, it was amazing!) the event was a fantastic opportunity to come together, learn from each other and get up-to-speed on the latest treatments and therapies.
This included a group of nine Aussie young people, who made the most of Congress – attending sessions, networking and even interviewing other attendees! Keep an eye on our socials to see what they got up to.
We will have multiple Congress reports in the next issue of National Haemophilia. In the meantime, check out the photos for a sneak peak.
Who is the NBA?
In the latest issue of National Haemophilia, Jo Cameron explains the National Blood Authority (NBA) and their role in relation to product funding, Horizon Scanning and MyABDR.
NBA manage and coordinate arrangements for the supply of blood, blood products and blood services in Australia. This ensures there is an uninterrupted supply of blood and blood products to Australians who need them. These products and services are funded by the Australian and State and Territory governments, so that they may be provided at no direct cost to patients.
Blood products include fresh products such as red blood cells, platelets and plasma, as well as many products that are manufactured from blood or are used instead of products made from blood such as recombinant clotting factors, plasma-derived products, immunoglobulins, and albumin, just to name a few.
They also manage the Australian Bleeding Disorders Registry (ABDR) and the MyABDR application. Accurate records in the ABDR and MyABDR support staff in HTCs to manage treatment and care more comprehensively.
Michelle’s journey to diagnosis
Michelle first experienced bleeding symptoms, in the form of really flooding periods, at the age of 19.
Nineteen years later – she got a diagnosis.
Michelle talks to us about her journey to being diagnosed as a ‘symptomatic carrier’ of haemophilia B, and how valuable receiving that diagnosis was.
“It can be incredibly frightening. To know something is really wrong with you and to not know what it is. One of the reasons diagnosis is great is because it ruled out things. I was worried I had something much more sinister. But the more you know about having a bleeding disorder, the more you can get your health back. There are treatment options out there.”
What’s coming up?
Throughout the year, HFA and our State/Territory Foundations participate in awareness campaigns and host events to bring the community together. See what’s coming up on the calendar below.
HFQ Mother’s Day High Tea – 9/5/2026
White Horse Ranch, QLD | Contact HFQ (Bookings closed)
HFNSW Brush & Sip Evening – 14/5/2026
Brush & Sip Studio Newtown, NSW | Book here
HFACT Playgroup – 17/5/2026
Funland Mitchell, ACT | RSVP to Laura (0406 830 472)
HFSA Community Day – 23/5/2026
Adelaide Zoo, SA | Find out more (Bookings closed)
HFV Men’s Retreat – 22-25/5/2026
TBC, VIC | Save the date
HFQ Youth Bowling & Arcade Day – 31/5/2026
Kingpin Chermside, QLD | Contact HFQ (Bookings close: 20/5/2026)
HFV Ladies Therapeutic Art Workshop – 31/5/2026
Camberwell Community Centre, VIC | Book here
Men’s Health Week – 15-21/6/2026
International Awareness Week | Find out more
HFACT Axe-throwing & Teen workshop – 28/6/2026
TBC, ACT | RSVP to Laura (0406 830 472)
World Hepatitis Day – 28/7/2026
International Awareness Day | Find out more
Bleeding Disorders Awareness Month – October 2026
National Awareness Month | Find out more
HFQ Family Camp – 16-18/10/2026
BIG4 Gold Coast Holiday Park | Opening Soon
HFNSW Family Camp – 27-29/11/2026
The Tops – Acacia Accom., Stanwell Tops, NSW | Book here
