Congress – improving diagnosis and care for WGBD

JOANNA MCCOSKER

Joanna McCosker is Haemophilia Nurse Practitioner at the Queensland Children’s Hospital, Brisbane.

As a fierce advocate for women and girls with bleeding disorders, WFH 2026 World Congress Kuala Lumpur did not disappoint!

WGBD Workshop: Improving diagnosis and multidisciplinary care for women and girls with bleeding disorders

Co-chairs: Anupama Pattiyeri, India; Lauren Phillips, New Zealand; Dawn Rotellini, USA; Jameela Sathar, Malaysia; Robert Sidonio, USA; Kelly Tickle, USA.

My first day was spent discussing ‘Improving diagnosis and multidisciplinary care for women and girls with bleeding disorders (WGBD)’, which highlighted the ongoing need for safety, efficacy and access to care for women with mild haemophilia, symptomatic carriers, von Willebrand disease (VWD), and other rare bleeding disorders.

Across the whole Congress I noted an inclusion of WGBD. It was a common theme and almost every session I attended (perhaps my bias) mentioned WGBD. Identifying haemophilia carriers was a common theme and a particularly impactful session with Dr Manuel Carcaro who outlined the story of a newborn with an intracranial haemorrhage and the devastating death of the baby and how it could have been prevented 26 years earlier by identifying the mother as a carrier. The missed red flags of the mother’s heavy menstrual bleeding could have been investigated and her carrier status identified. It is also important to note that intracranial haemorrhage is still a significant risk in the newborn period and this can be prevented by starting non-factor therapy early in the neonatal period.

Other notable take home messages:

1. Lifestyles are evolving and so is care for bleeding disorders, so we must continue to identify and meet evolving unmet needs.
2. Bone health in people with haemophilia, in particular haemophilia carriers, and in people with VWD is a big problem globally.
3. Low bone mineral density and higher rates of osteoporosis and fractures have been identified in haemophilia carriers and people with VWD. Rates of fragility fractures are significantly higher in females compared to males with bleeding disorders.
   • How do we as clinicians help identify bleeding disorder patients who are at risk of low bone mineral density?
   • How do we promote screening of peri- and menopausal women?
   • Are we optimizing vitamin D levels?
   • Are we using our multidisciplinary team to involve physiotherapists to encourage strength training?

There was a heartfelt moment whilst in a talk on a female with severe haemophilia A in the UK and her journey. I had the privilege of standing next to a mother, whose twin daughters are both haemophilia carriers, but one has severe haemophilia A. She was overwhelmed with emotion, as her tireless advocacy work had been validated with FINALLY a talk on severe haemophilia A in females at an international conference.

Thank you to the haemophilia community for allowing ‘us’ to care for you. #withloveJoanna

Australian haemophilia nurses were assisted to attend the WFH 2026 World Congress through funding from a variety of sources. For more information, see the WFH 2026 World Congress article.