For women with bleeding disorders, conferences can be a hit and a miss
Events are doing important things right, but women may still feel invisible
Last year was a year of conferences for me — at least 10 by my count.
It still amazes me that, in the hemophilia community, thousands of individuals and families are able to travel and attend these events at little or no cost, thanks to the support of event sponsors. That kind of access and financial support is rare in healthcare spaces.
And it isn’t accidental. It’s directly connected to the economics of hemophilia care: when treatment is expensive, the ecosystem around it becomes well-funded — especially education, outreach, and community building.
A friend once looked at my conference schedule and asked, “What more is there to learn?”
It’s a fair question. But anyone who lives with a bleeding disorder knows the answer isn’t just about education. It’s about connection, validation, and being in a space where your experience doesn’t need to be explained or defended.
Conferences in the bleeding disorders community can be powerful. They bring together people who rarely feel seen in everyday healthcare settings. They offer education, peer support, and that unmistakable relief of being in a room where you’re understood.
Inclusion, but on the surface
And yet, if you’re a woman with a bleeding disorder, you may leave feeling both grateful and invisible.
Many conferences are doing important things right. We are seeing more sessions focused on women and girls, more acknowledgment that hemophilia is not just a “male disease,” and more space for conversations about menstruation, pregnancy, aging, and mental health. That progress didn’t happen by accident. It happened because women spoke up, shared their stories, and refused to accept being sidelined.
Still, there are gaps — some subtle, some glaring — that remind us how much work remains.
One challenge, particularly at large national events, is surface-level inclusion. A single women’s session tucked into a multiday agenda can feel more like a checkbox than a commitment.
Women’s health in bleeding disorders isn’t a niche topic; it intersects with gynecology, orthopedics, mental health, access to care, and policy. When women’s experiences are siloed instead of integrated across the programming, the message is clear: this is supplemental, not essential.
There’s also the question of who is speaking. Panels about women’s bleeding disorders should meaningfully include women with lived experience, not just clinicians talking about us. Medical expertise matters, but so does perspective. The most impactful sessions are where data and lived reality meet.
Another area conferences often miss is ongoing virtual support for women. For all the meaningful conversations that happen in conference rooms and hotel hallways, those connections often disappear once everyone goes home. I’ve had countless women approach me at conferences asking — sometimes pleading — for a way to stay connected afterward.
That’s why I’m considering creating virtual support spaces through my website, Girls Bleed Too. By virtual support spaces, I don’t mean one-off Zoom events, but ongoing, accessible places where women can connect, share, and feel supported year-round. These spaces can remove barriers such as travel, health limitations, and caregiving responsibilities, making connections possible beyond conferences. Conferences ignite connection. Virtual spaces sustain it.
None of this diminishes the value of conferences. They change lives, build community, and fuel advocacy — and I am deeply grateful for them. But if we’re asking “What more is there to learn?” the answer is simple: how to do better.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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