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April is here, and with it World Haemophilia Day! Did you know, World Haemophilia Day is marked each year on 17 April in honour of WFH founder Frank Schnabel’s birthday. Scroll down for more info about the event, and a range of resources to help you show your support.
We also have a new National Haemophilia. The March issue focuses on raising awareness, sharing stories about living with haemophilia, VWD and Glanzmann thrombasthenia, and dives in treatment and care for people with bleeding disorders.
In a new video interview, we chat to Steve about his experience having gene therapy for haemophilia, and we also have a reminder to participate in the Women Bleed Too survey – open to all women and girls with bleeding disorders, and the people who support them.
Be sure to scroll to the end as well for a list of upcoming community events (there are heaps!) and research studies you can participate in.
As always, thanks for reading.
World Haemophilia Day
World Haemophilia Day is on this month! On 17 April watch as the world turns red in recognition of all bleeding disorders. This year’s theme, ‘Diagnosis: First step to care’ highlights the hundreds of thousands of people with bleeding disorders worldwide – including women and girls – whose lack of a diagnosis means they are missing out on basic care and support.
Help raise awareness
Help raise awareness for all bleeding disorders. Host a morning tea, place posters at your school or workplace, or simply update your profile picture. Get everyone involved with a quiz, colour-in sheets and a scavenger hunt.
- WHD 2026 Posters (A3)
- WHD 2026 Colour-in Sheets (A4)
- Bleeding Disorders 2026 Quiz (A4)
- Scavenger Hunt 2026 (A4)
- Update profile picture (Twibbonize)
Lighting up red
Around Australia, landmarks will light up red in support of World Haemophilia Day. Dress in red, head out to a landmark near you and take a selfie. See which locations are lighting up red here – View the list.
Women bleed too survey – closing soon!
Don’t miss out! HFA are conducting a survey to gather the experiences of Australian women and girls with bleeding disorders when they speak up for themselves in health care settings. We want to know what tools or resources help in these settings, how they could be improved, and what else is needed.
The survey closes Wednesday next week (8 April 2026). It can be completed by women and girls with bleeding disorders/carry the gene, or partners/family members who have accompanied/supported them.
National Haemophilia
The latest issue of National Haemophilia is now available in print and online. Being diagnosed with a bleeding disorder is a critical first step in treatment and care. In this issue we explore this theme for World Haemophilia and Rare Disease Day, looking at testing for haemophilia in females and personal stories about the challenges of growing up with rare bleeding disorders like haemophilia, VWD Type 3 and Glanzmann thrombasthenia.
We also explore treatment and care – what is the National Blood Authority (NBA) and how do they help with treatment? What are some of the new and emerging treatments for VWD? And what are the issues and supports for transitions early and later in life – from the children’s to the adult HTC and with aged care services?
Steve on gene therapy for haemophilia
Steve shares his experience having gene therapy for severe haemophilia A – and how it has changed his life.
“I’m in a space of feeling very grateful, very privileged because of my successful outcome. I’m very cognisant of where the haemophilia community’s come from, from the days of no treatment, some treatment into the current space of a range of treatments. And I’m also feeling very privileged being in Australia, having received gene therapy. I’m aware of how hard it is for people in developing countries who have very little or no access to treatment at all.” – Steve.
What’s coming up in April – July
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 Men’s Lunch – 1/4/2026
Bronco’s Leagues Club, QLD | Contact HFQ
World Haemophilia Day – 17/4/2026
International Awareness Day | Find out more
HFQ World Haemophilia Day Reception – 17/4/2026
Government House, QLD | Contact HFQ (Bookings closed 6/3)
HFWA Combined Breakfast – 19/4/2026
Hamptons City Beach, WA | Contact HFWA (Bookings close 10/4)
WFH 2026 World Congress – 19-22/4/2026
Kuala Lumpur, Malaysia | Find out more
HFQ Mother’s Day High Tea – 9/5/2026
White Horse Ranch, QLD | Contact HFQ (Bookings close 29/4)
HFACT Playgroup – 17/5/2026
Funland Mitchell, ACT | RSVP to Laura (0406 830 472)
HFSA Community Day – 23/5/2026
Adelaide Zoo, SA | Book here (Bookings close 30/4)
Men’s Health Week – 15-21/6/2026
International Awareness Week | Find out more
HFV Men’s Retreat – 22-25/5/2026
TBD, VIC | Save the date
HFV Women’s Event – 31/5/2026
TBD, VIC | Save the date
HFACT Axe-throwing & Teen workshop – 28/6/2026
TBD, ACT | RSVP to Laura (0406 830 472)
World Hepatitis Day – 28/7/2026
International Awareness Day | Find out more
Research Opportunities
Check the HFA website for more information on consumer research studies about bleeding disorders.
VWD type 1 observational study
VELORA Discover (Hemab) is an international prospective screening study which will observe bleeding and treatments in people with type 1 von Willebrand disease (VWD). The aim is to gather data on a large group of people that can then be compared to treatment outcomes in future clinical trials of new therapies.
This is an important step in researching new therapies in clinical trials.
What is involved?
• Being an adult (18 yrs+) with type 1 VWD
• A screening visit and blood tests to confirm VWD diagnosis
• Regular monitoring and reporting of bleeding events
• Questionnaires on health and daily life.
The study is open to HTC patients at the following hospitals:
• Royal Prince Alfred Hospital, Sydney, NSW
• The Alfred hospital, Melbourne, VIC
• Fiona Stanley Hospital, Perth, WA
If you are at one of these HTCs and are interested in participating, contact your HTC team.
