If diagnosis is the first step to care, how do we increase testing and treatment of women and girls with bleeding disorders – when they experience particular challenges, delaying their diagnosis by many years? Globally we have seen that women’s personal stories are a powerful agent for change. On 1-2 July 2026 18 women met in Melbourne for the Haemophilia Foundation Australia (HFA) Women’s Stories matter Workshop to focus on the art of telling your story effectively.
Coming together from nearly every Australian state and territory, the women were of different ages and diverse bleeding disorder experiences – and highly motivated. Some were members of the HFA Women and girls Advisory Committee (WOMAG); others had applied to participate.
It was an inspiring and informative two days. The workshop aimed to upskill Australian women with bleeding disorders around telling their personal story for their healthcare self-advocacy and to support HFA and local Foundations’ work to advocate for women with bleeding disorders.
We were fortunate to have Dawn Rotellini from the National Bleeding Disorders Foundation, USA, as guest facilitator. Dawn was the inaugural chair of the World Federation of Hemophilia Women and Girls with Bleeding Disorders (WGBD) Committee and has been diagnosed as a symptomatic carrier of haemophilia B herself. Her dynamic and engaging sessions were based on a wealth of personal and international experience. Leonie Demos, WOMAG chair, and Suzanne O’Callaghan from HFA co-facilitated with Dawn to consider the Australian situation and how to achieve change locally.
Sessions were practical but also explored a range of issues:
The evaluation of the workshop was overwhelmingly positive – both from the perspective of the participants and the facilitators. Thanks to Shannon, Rebecca and the facilitators who shared their reflections with us. Some excerpts are below.
‘It was all so wonderful. I think meeting everyone and introducing others to the group. It made me aware that I’m not the only woman and that we all have stories – amazing and in depth stories; however, similar stories as well.’
‘I really hope there are more opportunities for these women’s workshops in future! Thank you so much for the opportunity to take part. I really feel like this experience has unlocked a new me!’
Rebecca
‘I have grown up and raised a family within the bleeding disorders community. While I have experienced some of the issues discussed, listening to the stories of women with a wide range of bleeding disorders reinforced just how varied these experiences can be – and how important it is that women’s stories are heard.
‘The strongest message from the workshop for me was simple but powerful: bleeding disorders are not just about men. Women bleed too.
‘Listening to these stories reinforced how important it is that we continue to share them. Lived experience not only helps other women feel less isolated; it also shapes research priorities, informs clinicians, improves models of care and ultimately leads to better health outcomes. One of the communication workshops reinforced that our stories have power because they are authentic. They help others understand what statistics alone never can.
‘I left feeling hopeful. There is still a long way to go before women and girls receive the recognition and care they deserve but the commitment from the international community, HFA and those in the room was clear. Every conversation, every story shared and every woman who feels empowered to seek care or speak up contributes to that progress.’
Shannon
‘The education was exceptional, but it was the conversations, the shared experiences, the kindness, the encouragement and the genuine connections with other women that had the greatest impact on me. For the first time in a long time, I felt completely understood.
‘Meeting Dawn again was a particular highlight. Spending time talking with her reminded me why storytelling and advocacy matter so much, and how powerful lived experience can be when it’s shared with others.
‘I came home with new knowledge, new friendships and renewed confidence to advocate not only for myself and my family, but also for other women and girls living with bleeding disorders. More than anything, I came home with a renewed sense of purpose. I genuinely feel like I have found a spark that I thought I’d lost.
‘As parents and carers, we often become so focused on looking after everyone else that we forget to nurture ourselves. This workshop reminded me that investing in ourselves isn’t selfish, it allows us to show up more fully for our families, our communities and for the causes we care about.’
Dawn
I was honored and excited to be invited to help facilitate and present at the workshop. If I’m honest, I was also a little nervous. I was joining a group of women, most of whom I had never met before, and I hoped that by the time we said our goodbyes, everyone would feel empowered, supported, and uplifted.
What I received in return was an incredible gift.
From the moment we came together, I experienced warmth, trust, and genuine welcome. We quickly became connected as a community because the participants arrived with open hearts and open minds, willing to share their experiences and tell their stories. Each woman brought something valuable to the conversation, and together we created a space where everyone could learn, support, and encourage one another.
The workshop reinforced something I deeply believe: it is time to improve the diagnosis, treatment, and care journey for women and girls with bleeding disorders. We can do that together as an Australian bleeding disorders community by listening, believing, and supporting one another. When someone shares their symptoms or experiences, they deserve to be heard.
By elevating those voices and standing together, we can help pave the way for a future where fewer women face the challenges of being dismissed and more receive the care and understanding they deserve.
Leonie
As someone who has facilitated many workshops over years, I was overjoyed to be a part of the Stories Matter workshop. I learned so much from not only from my co-facilitators Dawn and Suzanne but from all the women who participated. These women showed their bravery in sharing their stories with each other. But they also had an appetite to learn how to share their stories to empower others – recognising that all their stories were important. I believe the workshop was another step towards improving health outcomes for women and girls with bleeding disorders and a reminder of the power of sharing stories collectively and with purpose. Many thanks to HFA team for the opportunity.
Suzanne
It was such a privilege to co-facilitate the workshop with Dawn and Leonie and be part of the journey with the amazing group of women who attended. Dawn, Leonie and Dr Elise Flynn all volunteered their time – and shared their phenomenal expertise and insights with so much care and preparation. We had a shared mission: I knew that there would be power in bringing this group of women together but when we reached the end, I was really moved to see the determination of the group to generate change for women and girls in Australia. And my thanks to the HFA team for all their work to make the workshop happen and create such a sensitive, supportive and enabling environment.
The women left the workshop inspired, each with their own commitments and plans to use what they have learned in their personal life and with their local community. We wish them well and will be touching base with them in a few months to hear about their experiences.
We thank Sanofi for providing an Education Grant to HFA to run this workshop.
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