National Haemophilia No 230 June 2025

Number 230 JUNE 2025

www.haemophilia.org.au

World Haemophilia Day

WFH Comprehensive Care Summit

Lighting it up red around Australia

What’s new in bleeding disorders?

2025 Conference Register now!

HAEMOPHILIA FOUNDATION AUSTRALIA

CONTENTS HAEMOPHILIA FOUNDATION AUSTRALIA

3 From the President 4 One year with ABDR 5 World Hemophilia Day

18 WFH Comprehensive

Haemophilia Foundation Australia

20 WFH Summit: New and

Street address: Greenwood Business Park, Building 1, Ground Floor, 301 Burwood Hwy, Burwood Victoria Australia 3125

Care Summit

complex treatment challenges

8 Australia Bleeding

Disorders Conference

10 Period products and creating a period kit

12 Identifying girls and women affected by haemophilia

15 EAHAD 2025: Managing

22 WFH Summit: What can POC-US tell us?

23 WFH Summit: new therapies and approaches

26 Factored In:

challenges over a lifespan

Alan’s story

Registered No.: A0012245M ABN: 89 443 537 189

Postal address: PO Box 2097, Burwood, Victoria. 3125 Tel: +61 3 9885 7800 hfaust@haemophilia.org.au www.haemophilia.org.au Editor: Suzanne O’Callaghan Read National Haemophilia online https://www.haemophilia.org.au/ national-haemophilia

ISSN: 0818-4933 (Print) ISSN: 2981-9148 (Online)

Cover photo: Bell Tower lit up red, Western Australia

Problems accessing MyABDR? HOW TO ACCESS SUPPORT Talk to the expert support team at the National Blood Authority (NBA) who can help you sort out any bugs.

MyABDR Support

Real people who are available 24/7!

T: 13 000 BLOOD (13 000 25663) E: support@blood.gov.au

National Haemophilia 230, June 2025

MULTIFACTOR AUTHENTICATION

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Some of you have given feedback on the challenges of multifactor authentication (MFA). The MyABDR development team have heard you and want you to know they are working on it!

With new treatments and new security measures, access can sometimes need a tweak or two to work smoothly.

A message from the NBA: ‘The NBA is aware of the concerns raised by MyABDR users regarding the MFA requirements and resolving this issue is a priority. The NBA are actively investigating solutions to streamline this process.’

Learn more about MyABDR and find links to help here: https://tinyurl.com/hfa-myabdr

Gavin Finkelstein President, Haemophilia Foundation Australia

It was great to see many landmarks across Australia and the world turn red in support of World Haemophilia Day. You can see some photos in this edition.

HEPATITIS C After compiling the January 2025 survey, we have looked at the current needs and priorities in our community. We can reassure you that our campaign is progressing and we hope to have more news soon.

We are aiming to share results in coming months.

WOMEN AND GIRLS ADVISORY GROUP

From the

President AUSTRALIAN BLEEDING DISORDERS CONFERENCE The Australian Bleeding Disorders Conference is in October this year in Brisbane. The Conference is a not-to-be missed powerhouse, bringing community, health professionals, policy makers and industry together to drive change and improve lives. For the first time we are hosting community meet and greets on Thursday afternoon before the Conference starts.

HFA and the state and territory Foundations have allocated funding to assist people living with a bleeding disorder, relatives/partners or carers to attend the Conference. You can find more information and applications forms on our website.

For young people, there will be an activity on the Thursday before the Conference, led by Alan Dursun who recently attended the WFH Youth Leadership training.

In 2025 there are already initiatives underway to address key issues, such as World Haemophilia Day and Women’s Health Week campaigns and a plenary and women’s breakfast at the national Conference, along with other activities. With a permanent voice at the HFA Council table, the agenda will remain current and we look forward to reporting more soon.

NEW THERAPIES You may be aware that gene therapy for haemophilia B is currently being assessed by government to become available for people with haemophilia B. We are aware some people in our community would like to see this as a treatment choice. HFA has made a submission to government as part of this assessment process. We thank all the community members who have contributed to interviews, surveys and provided personal stories to support the submissions.

So much is advancing rapidly in treatment for bleeding disorders and it has been exciting to hear of advances in new therapies for von Willebrand disease (VWD), with a range of clinical trials now becoming available. You can read more about them >>

National Haemophilia 230, June 2025

It has been wonderful to see the development of the HFA Council’s Women and Girls Advisory Group.

The Group now has a logo and a tagline to convey its priorities – education, equality, engagement.

Registrations are now open, and we look forward to seeing you there! www.haemophilia.org.au/conference-2025

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<< in Dr Liane Khoo’s report from the World Federation of Hemophilia Comprehensive Care Summit. If you are interested in new VWD therapies, speak to your local Haemophilia Treatment Centre or haematologist about what clinical trials are available.

You may have noticed that you are being invited to participate in quite a few research studies at the moment. One reason for this is that there are several new treatments for bleeding disorders currently going through the process to become available in Australia.

As part of this process there are studies underway to understand the impact on people with bleeding disorders and how to improve treatment and care.

In Australia decisions about health services, treatment and care are strongly influenced by research in the area.

HFA will draw your attention to some research studies via e-news and social media as they become available and you can view the studies online at: https://tinyurl.com/HFA-research-participating

STAY UP-TO-DATE With so much happening and changing very quickly, it’s important to stay up to date with what’s new.

You can register for the HFA e-newsletter by signing up at https://www.haemophilia.org.au/ helpful/sign-up. This will give you the latest news about bleeding disorders and HFA activities, with updates on events.

One Year with the ABDR Ashley Fletcher

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SUPPORTING BETTER OUTCOMES THROUGH RESEARCH

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It’s been a full and rewarding year in my role as the ABDR Research Fellow. Over the past 12 months, I’ve worked closely with clinicians, data managers, and the National Blood Authority to ensure the data collected in the Australian Bleeding Disorders Registry (ABDR) is used to improve care for people with bleeding disorders.

I’ve helped progress research into treatment patterns, outcomes for people switching to newer therapies like emicizumab (Hemlibra®), von Willebrand disease and Bleeding Disorders on Unknown Cause (BDUC).

I’ve also worked on strengthening the way research is conducted and reported using ABDR data, so it has the greatest possible impact - informing clinical practice, training specialists, and supporting better access to treatments.

Ashley at his desk

Thank you to the community for your ongoing contribution to the ABDR - it’s your data that drives this important work.

Haemophilia Foundation Australia joined the global bleeding disorders community to mark World Haemophilia Day on Thursday 17 April 2025.

World Haemophilia Day is recognised globally to raise awareness of haemophilia, von Willebrand disease and other bleeding disorders. This is a critical effort since with increased awareness comes better diagnosis and access to care for the millions who remain without treatment.

We had over 100 landmarks across Australia light up red to show support for the bleeding disorders community.

This year’s theme was Access for all: Women and girls bleed too.

World Haemophilia Day 2025 is a worldwide call to action to close the gaps in care for women and girls with bleeding disorders, who often face delayed diagnoses, limited access to treatment, and a lack of understanding about their unique needs.

Through recognition, diagnosis, treatment, and care, the quality of life of women and girls will improve, and the bleeding disorders community will become stronger.

In Australia, there are more than 7,600 people diagnosed with haemophilia, von Willebrand disease or other rare bleeding disorders.

We thank everyone who participated on 17 April 2025.

It was amazing to see the many landmarks that lit up red across Australia and we appreciate the support

FIND OUT MORE To learn more about World Haemophilia Day, visit our website: www.haemophilia.org.au/ world-haemophilia-day-2025

National Haemophilia 230, June 2025

Today, women and girls with bleeding disorders are still underdiagnosed and underserved. Only approximately 100,000 women and girls have been identified worldwide with haemophilia, VWD or other bleeding disorders. International experts are concerned about the many more who are still undiagnosed.

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WORLD HAEMOPHILIA DAY AROUND AUSTRALIA

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ACT

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2

New South Wales

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Northern Territory 1. HFA Wearing red.

2. Beau wearing red for World Haemophilia Day

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3. Australian Capital Territory (ACT) Royal Australian Mint.

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4-5. New South Wales Noah, his family and his classmates learning about bleeding disorders.

6-7. Northern Territory Jacqui and her family at the Darwin Convention Centre and Water Tower.

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Queensland

Tasmania

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Western Australia

Victoria

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8. Queensland Jodi and her family outside Rockhampton Customs House.

9. Tasmania HFT Vice President, David Fagan sent us this beautiful photo Tasman Bridge lit up red.

10. Victoria Drum Theatre, Dandenong.

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11-12. Western Australia HFWA hosted a morning tea at their office in West Perth.

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The Australian Bleeding Disorders Conference will take place at VOCO Brisbane from Thursday 16 to Saturday 18 October 2025.

ANNOUNCING OUR INTERNATIONAL KEYNOTE SPEAKER

EARLY BIRD REGISTRATION – CLOSES 30 JUNE 2025 Register for the Conference to attend stimulating sessions on the latest information and issues and connect with people with bleeding disorders, their families, carers, health professionals, policy makers, and industry.

Register by 30 June 2025 to take advantage of discounted early bird pricing!

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Find out more about registration fees and inclusions visit:

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FIND OUT MORE AND REGISTER NOW

www.haemophilia.org.au/conference-2025

Professor Cedric Hermans MD, PhD, FRCP (Lon, Edin) Professor Cedric Hermans is Head of the Division of Haematology, Hemostasis and Thrombosis Unit, and Hemophilia Center at Saint-Luc University Hospital in Brussels. He is a Full Professor and ViceDean at the Catholic University of Louvain. A past president of EAHAD and current board member of the World Federation of Hemophilia, he also serves as Editor-in-Chief of Haemophilia journal. Professor Hermans has authored over 370 publications, with research on haemostasis, thrombosis, and haemophilia care worldwide.

Come along to hear Professor Cedric Hermans speak during our plenary sessions on Women with bleeding disorders and Gene and emerging therapies.

DRAFT PROGRAM NOW AVAILABLE! Session topics: new and emerging therapies | getting older | youth | women and girls | rare bleeding disorders newly diagnosed | VWD | genetic testing and family planning | bleeds and joints across the lifespan For more details or to view the latest program, visit: www.haemophilia.org.au/conference-2025.

COMMUNITY FUNDING The Conference is an amazing opportunity for the bleeding disorders community to participate, gather information, make new connections and gain new

knowledge. To assist, HFA has opportunities to partially fund community members to participate.

For more details including the application form, visit our website. Local Foundations will also be offering assistance.

THANK YOU TO OUR SPONSORS

SILVER SPONSORS

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GOLD SPONSORS

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Period products and creating a period kit Laura Bardell Knowing how to manage bleeding hygiene, what products are available and how to use them when first starting your periods can increase your confidence and help you feel better prepared to care for yourself.

Sanitary tampons

An option is to create a period kit that you can easily access at home, school and when traveling. This can help you to feel ready for when your periods begin and can remain an important resource in the years to come!

• Tampons are inserted into the vagina where they absorb blood before it exits the body.

PERIOD PRODUCTS There are many options for period hygiene. It can be useful to identifying products you feel comfortable using before your period starts, purchasing them and including them in your period kit so they are ready when your period begins.

To being with you may not feel comfortable with all of the options available for period hygiene and some take a little bit of time and practice before you become familiar with how to use and care for them. It can be helpful to talk with a trusted adult or health professional about the options available to you and practice using them at home or with additional layer of protection at first.

• Tampons need to be changed at least every 3-4 hours or when full and disposed of into sanitary waste or household garbage bins.2 • Not everyone is comfortable wearing tampons and it can take some practice before feeling confident wearing them. Using a tampon applicator, wearing a pad or period underwear or only wearing tampons at home to start can help build confidence

Period underwear

Price range for one pair of regular reusable period underwear - $20– $30.

Available in some pharmacies and supermarkets and online.

Sanitary pads

Available at pharmacies, supermarkets and through free period product programs in public schools.1

• Period underwear varies in style and absorbency but often has a larger capacity than standard tampons and pads.

Price range for packet of 14 regular pads - $5–10.

National Haemophilia 230, June 2025

Available at pharmacies, supermarkets and through free period product programs in public schools.1

• Period underwear look and feel like regular underwear but are made up of absorbent layers which soak up blood as it exits the body.

Some of the available period hygiene products are:

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Price range for packet of 14 regular tampons - $5–10.

• Pads vary in size, shape and absorbency and are placed on the inside of your underwear where they absorb blood as it exits the body.

• Pads need to be changed at least every 4 hours or when full to ensure hygiene and comfort.

• After removal, pads should then be disposed of into sanitary or household garbage bins.2

• Period underwear needs to be changed regularly to ensure comfort and freshness.

• Once removed, if possible, they are best rinsed straight away with cold water until water runs clear.

They can then be stored in a wet bag or plastic bag until they are able to be washed in a regular cold cycle in the washing machine.

• Period swimwear is also available.

Price range for 1 reusable menstrual cup - $20–$50.

Available in some pharmacies and supermarkets and online.

• Menstrual cups are small, flexible cups usually made from silicon that are inserted into the vagina where they form a seal with the vagina walls catching blood before it exits the body.

• Menstrual cups vary in size, style and shape and will need to be chosen based on individual characteristics but offer a much larger capacity than tampons and pads.

• Removal of menstrual cups involves breaking the seal by pinching the bottom of the cup before pulling out gently, this is best done over a toilet or in the shower.

After removal cups can be washed and reused.

• Like tampons, learning to use a menstrual cup can take time and practice. Wearing them with a pad or period underwear can make the wear feel more comfortable when first starting.

• As menstrual cups rely on suction to stay in place, they are not recommended for people who have an intrauterine device (IUD) or those with pelvic floor dysfunction.3

Menstrual discs

Price range for one reusable disc - $30–$70.

Available online.

Menstrual discs are similar to cups, but have a flatter, wider design. Discs are also inserted into the vagina where they catch blood but are held in place by their position in the vagina, not suction, making them suitable for those with IUDs. • Discs offer an even greater capacity than cups and due to their wider design may be more appropriate for those who frequently pass large blood clots.

• Discs are often softer and more flexible than cups and therefore can be more comfortable for the wearer.

• Learning to use a disc is often easier than a cup, however removal can be a bit messier and is best done over a toilet or in the shower. After removal discs can be washed and reused.

Period kits

Making a period kit that includes your chosen period hygiene products before your period starts and keeping it somewhere easily accessible at home, school and when travelling can make beginning your period less daunting. Keeping your period kit well stocked and replacing items as you use them will also help ensure that you always have the items you need.

Other useful items for period kits: • A bag to store everything in this could be a Ziplock bag or any other bag of your choosing • Reusable handwarmers/ heat packs • Wet bag, plastic bag or Ziplock bag for storage of ready to wash clothing or period products • Spare change of clothing including underwear • Wet wipes, cloths, tissues • A small water source to use for cleaning hands or reusable products if needed - not all bathrooms have easy access to the sink and water so this can be a handy edition to a period kit. A small reusable water bottle works well for this purpose • Single dose pain relief or other medication as required.

Knowing what products are available for period hygiene and creating a period kit will help you feel more prepared and ready to care for yourself when your period starts. For further support with period care products reach out to your local HTC.

REFERENCES 1. Head A. How to reach people most in need of free period products. Burnet Institute. Accessed 5 February 2025. https://www.burnet.edu.au/knowledge-and-media/news-plus-updates/ how-to-reach-people-most-in-need-of-free-period-products-burnet-institute

2. HealthDirect. Menstruation (periods). November 2022, accessed 27 January 2025. https://www.healthdirect.gov.au/menstruation

3. van Eijk AM, Zulaika G, Lenchner M, et al. Menstrual cup use, leakage, acceptability, safety, and availability: a systematic review and meta-analysis. Lancet Public Health. 2019 Aug;4(8):e376-e393. https://doi.org/10.1016/S2468-2667(19)30111-2

Stock images: Karolina Grabowska for Pexels.com; Freepik.

Laura Bardell is a registered counsellor working with HFACT and a former midwife.

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Menstrual cups

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Identifying girls and women affected by haemophilia Lara Nicholson

WHAT IS A CARRIER? In genetics all females who have the gene alteration for haemophilia are described as haemophilia carriers, because they ‘carry’ the gene alteration.

IDENTIFYING HAEMOPHILIA CARRIERS

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In Queensland both the paediatric and adult Haemophilia Treatment Centres (HTCs) have clinics that aim to identify haemophilia carriers among women and girls statewide through their family trees and genogram (diagram of family relationships).

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The paediatric and adolescent carrier clinic commenced in 2019 and continues to be run by specialist Nursing Practitioner Joanna McCosker.

The paediatric and adult Queensland Haemophilia Centres work to identify and review possible and known carriers in collaboration with HTC Directors Dr Jane Mason and Dr Sally Campbell and their specialist nursing and allied health teams at the Royal Brisbane and Women’s Hospital and Queensland Children’s Hospital respectively. The adult HTC sees haemophilia carriers within the main haemophilia clinic and is regularly referred women for genetic counselling and testing.

Once a potential carrier is contacted or presents at the Centre, the HTC supports them to test their factor levels and begins assessment and treatment specific to their condition. For potential carriers a process of genetic counselling is undertaken, and genetic testing is done at a time that is right for the individual woman.

In Queensland we have shared leadership across the paediatric and adults HTC hospitals with excellent communication across sites. Clinicians at both sites can update family genograms, which improves identification and testing of carriers. We have a process of identifying haemophilia carriers through routine reviews after childbirth with haemophilia carriers who deliver a female and engaging that baby immediately with the paediatric carrier clinic as a possible carrier.

At other HTCs around Australia haematologists regularly see haemophilia carriers and our national colleagues are looking at ways to connect potential and known carriers to relevant testing and treatment pathways. The HTCs are also prioritising and building crucial relationships with genetics, obstetrics and gynaecology colleagues and looking at ways to develop a more female-centric approach.

REBECCA’S STORY

soon as I knew I was pregnant he tested my FVIII (8) protein levels so we could plan for the birth.

When has it been most relevant for you?

For me personally, knowing my carrier status has only been relevant for pregnancy but I have no medical history outside of that.

How did you prepare for your pregnancy?

Rebecca is a haemophilia carrier and recently delivered a baby boy up north in regional north Queensland.

When did you first know you were a carrier of a bleeding disorder?

I officially knew I was a carrier of haemophilia A when I was pregnant with my first child. That was my choice. I knew that it was a likely possibility for a long time before that, as both my brothers have severe haemophilia A and I personally was a bit prone to bruising.

How did you find out?

I often wonder if other carriers feel daunted by the conversation that their child may have a lifelong condition with their future partners? I felt it was such a vulnerable place to be, yet an extremely important part of preparing for pregnancy. I think it was valuable to my husband that he knew about it very early on in our relationship. I also tried to check in on him throughout the thick of it. Pregnancy, labour and fatherhood can be just as daunting for new dads let alone when there is all this other stuff to learn and consider.

My GP was the perfect person to oversee my pregnancies because he also looks after my brothers and does a lot of obstetric work in our town. So as

I found that the challenge as a pregnant carrier in regional Queensland was planning for birth. Small town hospitals do not feel equipped to manage the birth in the event that something could go wrong. The convenience of birthing close to home is not an option. You need a large support network because for us it meant relocating before the due date - I stressed everyone out and didn’t move until 38.5 weeks and for reference my son was born 40 weeks 5 days, haha! The logistics of travel from my local town to the regional city had a lot of variables and the roads are in a terrible condition at the best of times let alone labour. And I had lots of people on standby to help with our daughter.

The personal stories of Rebecca and Leilani are only two of many unique stories belonging to Australia’s potential haemophilia carriers. What is apparent in their stories alongside existing HTC clinics running nationally is that haemophilia carriers may or may not be engaged with an HTC but can be linked in at any age with a systematic process of referral to start a conversation.

Even then, however, there are practical and understandable factors that influence if and when a haemophilia carrier has the appropriate factor level testing. Life is busy for any parent from the moment their child is born.

Haemophilia being more treatable now also means the community are less connected to both each other and their Treatment Centres to share wisdom. >>

I first learnt about the possibility of being a carrier when I was 11. Growing up I always attended my brothers’ HTC outreach clinics and this particular year we met the HTC Director. He was the first one to explain what it meant to be a carrier. Up until that point I hadn’t considered how haemophilia could affect my personal future separate to my brothers. From that discussion I decided not to test myself until I was actually having children.

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Rebecca and her baby boy

Knowing the carrier status was useful when it came to preparing for the birth and we had a very well-planned labour. A lot was put in place before our son was born, which I thought was great. We did not know however that he was a haemophiliac until after he was born because I chose not to have any foetal testing.

My husband and I felt that the risks did not out-way the benefit of knowing in our specific context and birthing history.

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<<

Unfortunately, many women who carry the gene alteration for haemophilia describe feelings of complex guilt for having children who are carriers or who have haemophilia and their capacity to engage with haemophilia generally can be traumatic for them.

LEILANI’S STORY

In summary, the landscape has shifted significantly over time, prioritising the access of girls and women who are haemophilia carriers to clinics and testing and the focus remains on improving communication between adults and paediatric health services nationwide on this important topic.

If you or anyone you know thinks they or their child might be a haemophilia carrier, please reach out to your local Haemophilia Treatment Centre.

MORE INFORMATION If you would like to know more about testing, treatment and care for girls and women in your state or territory, speak to your local Haemophilia Treatment Centre.

To find out more about haemophilia carriers and contact details for Haemophilia Treatment Centres in Australia, visit the Haemophilia Foundation Australia website: www.haemophilia.org.au.

Leilani is a potential carrier

How did you know you might be a carrier of a bleeding disorder?

Photos supplied by Rebecca and Leilani’s parents and reproduced with permission.

Stock image: Javy Indy for Freepik

My family’s [previous] generations have haemophilia - like my pop who passed it down to my mum making her a carrier, making me a potential carrier of haemophilia.

What do you know about bleeding disorders?

Bleeding disorders include blood not clotting properly like haemophilia.

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Who are the members of your family who have a bleeding disorder and what do they have?

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My brother, grandfather and cousin have haemophilia

If you are a carrier, what do you need to think about for the future?

Be prepared for when I have a child and be extra careful when it comes to terms of them hurting themselves. I need to expand the safety of them and think about my bleeding disorder alongside surgeries for me.

Lara Nicholson is Senior Social Worker at the Haemophilia Treatment Centres at the Queensland Children’s Hospital and the Royal Brisbane & Women’s Hospital, Queensland.

EAHAD 2025

EAHAD 2025: managing challenges over the lifespan Yuhsuan (Yoshi) Lin Attending EAHAD 2025 in Milan, Italy was a fantastic and enriching experience.

This event brought together specialists not only from across Europe but also from around the world, creating a collaborative space to explore the latest research and key developments in patient management - particularly in the area of psychological care.

LIFELONG CHALLENGES Paul McLaughlin from the UK presented an insightful session on the lifelong challenges faced by individuals with bleeding disorders.

He highlighted how personality types influence how patients respond to changes and barriers in their care.

For instance, some may withdraw completely and become disengaged.

He also emphasized that personal and family experiences - whether positive or negative - with Haemophilia Treatment Centres (HTCs), general practitioners, community services, or other care providers significantly impact how patients interact with healthcare professionals and adhere to treatment plans. Additionally, he discussed how education levels affect patients’ understanding and interpretation of medical information.

One critical factor influencing treatment adherence and attendance at follow-ups is the geographical accessibility of care facilities such as HTCs, hospitals, or GP clinics.

Yoshi and Norwegian nurse and haematologist colleagues at her poster. L-R: Synne Hole, Ane Halbred, Yuhsuan (Yoshi) Lin, Heidi Knudsen Photo: Yuhsuan Lin

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Throughout the conference, comorbidities in an aging population were also discussed—such as cardiovascular disease and reduced joint and muscle strength—further reinforcing the need for holistic, chronic condition-style care for those with bleeding disorders. >>

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WOMEN AND MENOPAUSE

RESIDENTIAL CARE HOMES

Psychological counsellor Christina Burgess, also from the UK, drew attention to the unique needs of women with bleeding disorders, particularly during perimenopause and post-menopause. She described how women often experience unexpected bleeding, stomach cramps, hormone imbalances, and bruising during perimenopause.

Anne Juanos, a physiotherapist from Zurich, addressed a topic that’s often overlooked: the care of patients with bleeding disorders living in residential care homes.

While physical symptoms may ease post-menopause, psychological concerns become more prominent.

Many women reported feeling a loss of confidence and femininity, along with a diminished sense of self at home and in the workplace. Some even expressed guilt over how menopause-related changes affected intimacy with their partners.

Unfortunately, this valuable insight was based on feedback from fewer than 20 women, as many HTCs currently do not address this area during routine reviews. Christina proposed the formation of women’s support or peer groups, or even creating a dedicated space within clinics where women can connect and share experiences.

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She also emphasized the importance of healthcare professionals listening attentively—not just to what is said, but to what may be implied—and asking thoughtful, open-ended questions to better understand these women’s lived experiences.

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Her presentation sparked discussion about the need to adapt our multidisciplinary teams to better support this growing demographic. She encouraged open conversations with older patients about their living options as their independence declines, and asked thought-provoking questions like: ‘Do we have enough resources and information to support bleeding disorder patients in care homes?’ and ‘Should advance care plans include specific considerations for managing haemophilia?’

One of the most impactful initiatives from her Centre was a fall-prevention workshop focused on balance training—a proactive intervention that can benefit not only elderly patients, but also younger adults with joint damage.

Mary Kavanagh, from Children’s Health Ireland and Chair of the EAHAD Nurse Committee, shared a compelling case study on managing two brothers with severe haemophilia A. Despite having the same health condition and growing up under the same care model, the brothers developed very different perceptions of their illness and responses to treatment. Mary and her team

explored how family dynamics and individual personalities influenced their psychological development and engagement with healthcare services.

She encouraged professionals to understand each patient’s personal perception of their condition and their expectations of care. She also raised a thoughtprovoking question: ‘Do we, as health professionals, unconsciously have a ‘favourite’ patient in our HTCs?’ A question that sparked reflection among attendees.

Name

David

Ben

Age

22yo

18yo

Background

Good relationship with grandparents and mum.

Distanced from dad.

Grew up with domestic violence at home.

Constantly seeking approval from dad.

Close to mum but not grandparents.

Haemophilia B

severe

severe

Average bed admission annually

>70

<10

Joint health score

Significantly poor

low

Social life

Active; outgoing; optimistic.

Very closed - only likes music, gaming; negative, disengaged.

Medical aid

wheelchair

none

HTCs

Actively engaged.

Participates in changes and talks.

Disengaged, resistant. Always says ‘it’s David’s HTC’, ‘it’s David’s medical team.’

Treatments

Compliance

not so compliant

Granddad: haemophilia B poorly managed.

Mum: carrier

Overall, EAHAD 2025 was a truly inspiring conference. It offered a wealth of valuable sessions that focused on patient care, management, and treatment—particularly from a nursing perspective.

Many of the insights shared are directly applicable to our current care models, and I left feeling both motivated and equipped to enhance the support we provide to our patients.

Yushuan (Yoshi) Lin was assisted to attend EAHAD through funding from the Nurses Education Fund, which is administered by HFA. Stock photo of Milan: Francesco Ungaro for Pexels.com

Yuhsuan Lin (Yoshi) is Haemophilia Nurse Consultant at the Royal Adelaide Hospital, South Australia.

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PERSONALISING CARE MANAGEMENT

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WFH CCS Summit

WFH Comprehensive Care Summit 2025

The WFH Comprehensive Care Summit took place on 23-25 April 2025 in Dubai, UAE. The Summit is one of the World Federation of Hemophilia (WFH)’s major meetings and focused on new developments in bleeding disorders and musculoskeletal issues (MSK).

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This is an opportunity to find out about cutting edge research, the latest innovations in treatment and care and managing today’s challenges. What key advances were discussed?

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We were fortunate to have a number of Australian health professional and community delegates attending the Summit and the associated WFH meetings. In this issue of National Haemophilia, HTC Director Dr Liane Khoo, haemophilia physiotherapists Alison Morris and Elise Mosey and Australian youth delegate Alan Dursun share their reflections on the Summit and highlights from the meetings.

Summit audience

L-R: Elise Mosey, Alison Morris, Alan Dursun, Dr Liane Khoo Photos: Dr Liane Khoo, Elise Mosey, WFH. Reproduced with permission

‘This global meeting brought together over 825 clinicians, researchers and advocates from 93 countries united in their commitment to improving care for people with bleeding disorders.

Two consistent themes persisted across all the plenary, medical, musculoskeletal and patientcentred sessions. These were WFH’s ongoing mission to promote treatment for all, regardless of geography or economic status, and the importance of recognising underrepresented groups, including those with the rarer bleeding disorders and women and girls living with these conditions.’

Alison Morris, haemophilia physiotherapist

‘As my first experience at an international haemophilia conference, the Summit was both a professional milestone and a deeply inspiring opportunity to learn and connect.

The Summit surpassed my expectations in many ways - not because of any one standout session, but due to the consistent themes of advocacy for equitable treatment and a strong emphasis on collaboration that resonated throughout.’

Elise Mosey, haemophilia physiotherapist

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SUMMIT REFLECTIONS

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WFH CCS Summit

WFH Summit: new and complex treatment challenges Alison Morris It was an honour to represent Haemophilia Foundation Australia (HFA) at the 2025 WFH (World Federation of Hemophilia) Comprehensive Care Summit in Dubai and I am pleased to share some clinical highlights and personal reflections.

NON-SEVERE HAEMOPHILIA Non-severe hemophilia: How do we care for the new ‘severes’ Chairs ~ Cedric Hermans, Belgium; Susan Halimeh, Germany

Describe the burden of non-severe hemophilia ~ Pratima Chowdary, UK How do we best design studies to demonstrate benefit in non-severe hemophilia ~ Cedric Hermans, Belgium Inhibitors in non-severe & women with bleeding disorders ~ Steven W. Pipe, USA

National Haemophilia 230, June 2025

Photo: WFH

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David Stephenson, UK physiotherapist, and Ali Morris Photo: Alison Morris

One particularly thought-provoking session, Nonsevere haemophilia: how do we care for the new severes, described a new category of ‘nonsevere’ in a presentation by Pratima Chowdary from the KD Comprehensive Care Haemophilia Centre at the UK’s Royal Free Hospital.

Dr Chowdary challenged the traditional classification of haemophilia by factor levels, mild, moderate and severe – stating that this model no longer reflects >>

the complexity of current clinical presentations.

The non-severe category now includes those with mild or moderate haemophilia, patients with severe haemophilia patients receiving non-factor therapies or post gene therapy and women with low factor levels and symptomatic bleeding.

Many in these groups remain at risk of joint disease, arthropathy and reduced quality of life. Importantly, they often have fewer interactions with Haemophilia Treatment Centres (HTCs) and have less access to education and support. This can result in the lack of recognition of bleeding episodes and subsequent delayed presentation for appropriate care. This gap must be urgently addressed through greater inclusivity and updated models of care.

MSK CHALLENGES

invaluable. It is also humbling to be reminded how lucky we are living and working in Australia where so many of the challenges elsewhere in the world are eliminated.

A particularly special moment was witnessing Canadian physiotherapist Greig Blamey receive the Pietrogrande Prize, which recognises significant contributions to the work of the WFH Musculoskeletal Committee. Greig was described as ‘a gift to the musculoskeletal community whose work doesn’t end here but lives on through every patient helped, every professional trained and every conversation sparked.’ Many in the bleeding disorders community will remember the impact he had when he served as a keynote speaker at our 2019 national conference.

Clinical cases - Roundtable discussion Chairs ~ Christian Carulli, Italy; Carla Daffunchio, Argentina

Case #2: Patient with inhibitor: How can we manage the hematologist, orthopedic surgery and physical therapy treatment?

Italian orthopaedic surgeon, Mr Christian Carulli, presented an exceedingly complex case of an adult patient with severe haemophilia and high titre inhibitors. This patient’s long term treatment journey included multiple orthopaedic surgeries for joint arthropathy, a pseudotumour, aseptic loosening of prostheses and infection. Treatment was further complicated by the interruptions to health care as a result of the COVID pandemic. Discussions explored varied treatment approaches based on geographical and economic perspectives, offering practical lessons and future directions.

Greig receiving his award Photo: WFH

Finally, I would like to express my sincere appreciation to Haemophilia Foundation Australia for their financial assistance which allowed me to attend this summit and encourage all readers to register their interest in the upcoming Australian Bleeding Disorders Conference in Brisbane in October 2025.

Alison Morris was funded by HFA to attend the WFH Comprehensive Care Summit as a representative of the Australia And New Zealand Haemophilia Physiotherapy Group (ANZHPG).

CONNECTING WITH COLLEAGUES Beyond the educational program, a personal highlight was the opportunity to reconnect with colleagues that I hadn’t seen since pre-COVID. The opportunity to network, share ideas and experiences is always

Alison Morris is Senior Musculoskeletal Physiotherapist at Perth Children’s Hospital, Western Australia

National Haemophilia 230, June 2025

Another standout session was the musculoskeletal round table clinical case session, where multidisciplinary groups, including physiotherapists, orthopaedic surgeons and haematologists, worked together on clinical problem solving.

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WFH CCS Summit

WFH Summit: what can POC-US tell us?

Elise Mosey I recently attended the WFH Comprehensive Care Summit in Dubai and was honoured to represent Haemophilia Foundation Australia (HFA) alongside my physiotherapy colleague Ali Morris from Perth Children’s Hospital.

A DIVERSE PROGRAM Over three full days, the program was divided into three streams: Medical, Musculoskeletal, People with bleeding disorders.

Plenary sessions covered an impressive range of topics, including rare bleeding disorders, the integration of AI (artificial intelligence) and digital health technologies, musculoskeletal management in the context of novel therapies, lived experiences of women with bleeding disorders, and the global disparities in access to care. There were also insightful debates around optimal treatment strategies for haemophilia A and B in light of emerging therapies, and interactive multidisciplinary case discussions.

National Haemophilia 230, June 2025

A COLLABORATIVE APPROACH

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What stood out most was the genuine sense of cohesion between the streams. Despite being organised by specialty, there was significant crossover in both content and participation. Haematologists contributed meaningfully to musculoskeletal sessions, and people with bleeding disorders shared powerful personal experiences during Q&A sessions in the medical stream. The spirit of collaboration was tangible, and colleagues from around the world generously shared knowledge from their many decades of experience and were always interested in learning about our clinical practice in Australia.

Elise Mosey was funded by HFA to attend the WFH Comprehensive Care Summit as a representative of the Australia And New Zealand Haemophilia Physiotherapy Group (ANZHPG).

POINT-OF-CARE ULTRASOUND (POCUS) One of the most relevant topics for my current work was the discussion around point-of-care ultrasound (POC-US), which we are in the process of introducing at Queensland Children’s Hospital.

Clinicians who use POC-US routinely described identifying chronic synovial changes in joints even in the absence of documented bleeds, highlighting the potential of POC-US to provide valuable insights into joint health.

This also drew attention to the challenge of detecting and addressing subclinical bleeds. Carla Daffunchio, a physiotherapist from Argentina and Chair of the WFH MSK Committee, presented compelling data showing that 16% of children with haemophilia on prophylaxis without reported bleeds had MRI evidence of subclinical bleeding. This was surprising and has prompted reflection on our own assessment protocols.

THE POWER OF PERSONAL STORIES Equally enriching were the conversations I had with men and women living with bleeding disorders from across the globe. Hearing their stories, particularly those reflecting on childhood experiences and the impact of haemophilia on participation in sport and extracurricular activities, gave me a deeper appreciation for the treatment access we have in Australia. Working at a children’s hospital, these perspectives were especially meaningful, and I left with renewed motivation to advocate for inclusive, proactive care.

Elise Mosey is Senior Physiotherapist at Queensland Children’s Hospital, Brisbane

WFH Summit: new therapies and approaches Liane Khoo Health literacy, new VWD therapies, women The World Federation of Haemophilia (WFH) 2025 Comprehensive Care Summit took place in Dubai, UAE from 23-25 April 2025. It brought together over 800 attendees from 93 countries; and I was fortunate enough to be able to attend it.

The Summit covered a wide range of topics, and I was particularly interested in the sessions on:

(i) Improving health literacy to improve shared decision making (ii) Raising awareness and new therapies for von Willebrand disease (VWD) (iii) Women and girls with bleeding disorders, especially with the newly formed HFA Women and girls Advisory Group.

HEALTH LITERACY AND SHARED DECISION-MAKING New paradigm in patient education with new treatments ~ Kate Khair, UK

Alan Dursun and Dr Liane Khoo at the Summit Photo: Liane Khoo

She highlighted that in the last twenty years treatments have evolved from plasma and plasma derived products through recombinant factors (standard, extended, ultraextended replacement therapy), monoclonal antibody therapy and gene therapy; with many other innovative therapies currently in clinical trials.

For those with haemophilia and their caregivers this raises issues of therapeutic choice. >>

National Haemophilia 230, June 2025

Dr Kate Khair, Director of Research, Haemnet, discussed a new paradigm that has developed in patient education with the new therapies.

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WFH CCS Summit

<<

VWD NEW THERAPIES Novel VWD treatment ~ Caterina Casari, France VWD & rare bleeding disorders - new technologies ~ Paula James, Canada Continuing the theme on new innovations, there was a focus on new therapies for von Willebrand disease (VWD), presented by Dr Caterina Casari and Dr Paula James.

These new therapies include: 1. Increasing endogenous VWF • Molecules: HMB-002, BT200, KB-V13A12

Paula James discussing new VWD therapies with Glenn Pierce. Photo: WFH

Patient education is now more imperative than ever before, to enable informed shared decision-making about current and potential future treatments. Health literacy (a person’s ability to understand and use information to make decisions about their health) is necessary to underpin these decisions and we as a community need to be part of this journey. It is exciting that in Australia HFA is being proactive in this space with the ongoing development of the GETS (Gene and Emerging Therapies) Hub website.

2. Increasing procoagulant potential • FVIII (8) mimetics: emicizumab, Mim8, BIV001, NXT007 • General haemostatic agents: platelet-inspired nanoparticles, fitusiran, VGA039, marstacimab/concizumab 3. Correcting genetic alterations • siRNA, gene therapy, CRISPR-Cas9-based editing 4. Preventing VWF degradation • Anti-VWF Ab50 8, Anti-ATS13 Ab17C7

STRATEGIES

CHALLENGE

A systematic approach to the identification of women and girls with bleeding disorders

Same attention should be paid to XY and XX (PWH)

In real-life, attention paid to XY PWH; XX (PWH) are ignored Regular updates of pedigree (XY and XX) at each review clinic

Educate XY/XX PWH about implications for all XX family members

Proactive and systematic out-reach in each family

Active database of all PWH (XY and XX)

Inclusion in registries of XX PWH

Need for Guidelines

Access of XX PWH to innovations

Inclusion of XX PWH in research projects

Empowerment of male PWHs about XX issues

Figure 1. A systematic clinic approach to the identification of women and girls with bleeding disorders ~ Cedric Hermans1 24

This is an exciting time for people with VWD as there are a lot more therapies that are becoming available in clinical trials.

We are fortunate in Australia to have several of these new treatments available as part of a clinical trial.

If you are interested in new VWD therapies, speak to your local Haemophilia Treatment Centre or haematologist about what clinical trials are available.

WOMEN AND GIRLS There were also great sessions focusing on women and girls with bleeding disorders, including sessions on heavy menstrual bleeding.

Talks acknowledged the current challenges, barriers, underdiagnosis, taboos, medical sexism etc..; with an important call to action in this area.

There was a good reference on strategies on how we can identify patients in clinic (see figure 1).

VWD fact sheet Looking for some simple information about von Willebrand disease (VWD) to share with others?

The HFA Von Willebrand disease (VWD) fact sheet answers FAQs with the latest information: • What is VWD? How do you get it?

• What are the symptoms and types?

• How is it diagnosed and treated?

There were lots of other areas covered at the Summit, including health equity, machine learning, ageing, pain… and many more interesting topics.

I look forward to seeing a good Australian contingent at the next WFH Congress in Kuala Lumpur, Malaysia – 19-22 April 2026!

REFERENCES 1. Hermans C. A systematic clinic approach to the identification of women and girls with bleeding disorders.

Haemophilia 2025; 31:3–20. https://doi.org/10.1111/hae.70031

Share it with your family – or keep it on hand for new doctors, school or to give people a quick explanation.

www.haemophilia.org.au/resources Or contact HFA for print copies: E: hfaust@haemophilia.org.au T: 03 9885 7800

Dr Liane Khoo is a haematologist and Haemophilia Treatment Centre Director at the Royal Prince Alfred Hospital, Sydney.

National Haemophilia 230, June 2025

National Haemophilia 230, June 2025

Download the fact sheet from the HFA website:

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WFH youth leadership training Hi, my name is Alan and I have severe haemophilia A

National Haemophilia 230, June 2025

It was incredibly valuable being surrounded by passionate youth leaders from around the world.

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It was exciting to hear that Australian Alan Dursun has been invited by the World Federation of Hemophilia (WFH) to join their Youth Leadership Program. WFH funded him to attend the Global Youth Leadership Training and the 2025 WFH Comprehensive Care Summit in Dubai.

Alan talked with HFA about his experiences and how the training has inspired him with developing youth activities in Australia. Alan is currently HFNSW Vice-President.

What was your general impression of WFH Global Youth Leadership Training?

The experience was incredibly valuable. Being surrounded by passionate youth leaders from around the world reinforced how important global collaboration is in our community.

The sessions were thoughtfully structured and focused on building practical leadership skills. It was clear the WFH team was intentional about creating a program that supports both personal and professional growth.

Alan’s story Another highlight was Project Proposal Development, which gave clear, actionable guidance on structuring effective initiatives. This will be particularly valuable for future youth-led projects within our national community.

The sessions focused on building practical leadership skills.

What did you get up to with the Youth Fellows?

From the start, we built strong connections through shared experiences and open conversations.

The Youth Dinner in Al Fahidi was a highlight — traditional Emirati cuisine, cultural exchange, and the chance to learn from each other in a relaxed setting.

Throughout the program, we developed meaningful friendships, exchanged insights from our NMOs (National Member Organisations), and supported each other’s goals.

We built strong connections through shared experiences and open conversations.

What was your take-home message?

Youth leadership thrives when it’s supported by the right tools, structure, and mentorship. The training reinforced the importance of creating space for young people to step into leadership roles with purpose and clarity.

I returned with a stronger sense of direction and a renewed commitment to empowering youth across our bleeding disorders community.

Find out more

The Youth Dinner in Al Fahidi was a highlight.

What sessions were highlights and why?

The Marketing for Advocacy session with Patrick James Lynch stood out. It provided powerful insight into using personal stories and digital platforms to drive impact.

It made me reflect on how we can better elevate youth voices within Haemophilia Foundation Australia.

Youth activity As part of Alan’s youth leadership training and implementing his learnings, he is going to lead a youth activity on Thursday 16 October 2025 in Brisbane before the Australian Bleeding Disorders Conference.

If you are interested • contact HFA hfaust@haemophilia.org.au • or visit https://www.haemophilia.org.au/ conference-2025 Images were provided by Alan Dursun and WFH (wfh.org) and are reproduced with permission.

National Haemophilia 230, June 2025

To read more about youth leadership and personal stories from young people with bleeding disorders, visit the FACTORED IN youth section on the HFA website - www.haemophilia.org.au/youth/

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CALENDAR

ACKNOWLEDGEMENTS

Bleeding Disorders Awareness Month October 2025 www.haemophilia.org.au/BDAM

Haemophilia Foundation Australia (HFA) acknowledges funding grants received from the Australian Government.

Australian Bleeding Disorders Conference, Brisbane 16-18 October 2025 www.haemophilia.org.au/conferences World Haemophilia Day 17 April 2026 wfh.org/world-hemophilia-day

We thank the individuals, service clubs, philanthropic trusts and businesses that have made donations to HFA. We acknowledge the education and awareness grants and/or conference sponsorship from the following pharmaceutical companies:

CSL BEHRING | NOVO NORDISK | PFIZER AUSTRALIA ROCHE | SANOFI GENZYME | TAKEDA

WFH World Congress 2026 Kuala Lumpur, Malaysia 19-22 April 2026 wfh.org

Get ready!

Bleeding Disorders Awareness Month October 2025 Promotional items available soon.

See the HFA website for more information: www.haemophilia.org.au/BDAM or email: hfaust@haemophilia.org.au

NATIONAL HAEMOPHILIA is a publication of Haemophilia Foundation Australia. Every effort is taken to ensure accurate and relevant content, however opinions expressed in NATIONAL HAEMOPHILIA do not necessarily reflect those of the Foundation or the editor, nor is any information intended to take the place of advice from a qualified medical practitioner or health professional.

Haemophilia Foundation Australia does not endorse or assure the products, programs or services featured in NATIONAL HAEMOPHILIA and does not make specific recommendations for any products, programs or services.

We welcome reproduction of articles or quotations from NATIONAL HAEMOPHILIA on the understanding that acknowledgement is made of NATIONAL HAEMOPHILIA as the source.

Haemophilia Foundation Australia acknowledges the Traditional Owners and Custodians of Country throughout Australia, the land, waters and community where we walk, live, meet and work. We pay our respects to Elders past, present and emerging and extend that respect to all Aboriginal and Torres Strait Islander peoples.

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