A special start to a conference filled with hope for women who bleed
Reflecting on a powerful event that kicked off this year's Hope Conference
The energy in the room was unmistakable. Before the official start of the Hope Conference in Orlando, Florida, last week, a group of women had been invited for a special preconference event — a day set aside just for us. It was marked by laughter, the sharing of stories, and a sense of belonging, which doesn’t always come easily for many of us.
Living with a bleeding disorder as a woman often means years of being misunderstood by doctors, family, and sometimes even ourselves. But being surrounded by women who have faced similar struggles meant there was no need to explain or justify ourselves. We could simply be.
The women’s preconference gathering was like a mirror, because we saw ourselves reflected in each other’s experiences — the frustration of delayed diagnoses, the exhaustion of being told that “women aren’t bleeders,” the quiet triumph of finding the proper care at last.
For me, it was deeply personal. Decades ago, when I was diagnosed, the idea of a women’s preconference for bleeding disorders would have seemed impossible. Back then, women like me were considered rare, and there was little sense of community and connection. Sitting in that room, I couldn’t help but think about how far we’ve come — how the conversations that once happened in whispers are now being given a platform. The very fact that this space exists feels like a sign of progress.
Carrying hope forward
When the main Hope Conference, which the nonprofit Hope for Hemophilia organizes, began the next day, that sense of connection only deepened. Families of men, women, and children filled the venue — each person carrying their own story, yet bound by a shared journey of resilience and understanding.
Session topics ranged from treatment updates to mental health and advocacy. But the real power of the Hope Conference was found in the hallways, at lunch tables, and in quiet conversations between sessions. That’s where friendships were formed and fears were eased.
It’s easy to see a preconference event as just an “add-on,” but for the women who attended, it was fundamental, providing us with the space to name what’s often left unspoken: the bleeding, the fatigue, and the frustration of being dismissed by healthcare providers. Equally important, it gave us permission to celebrate our resilience.
When women share their stories like this, it creates ripples of change. It influences how care is delivered, how research is prioritized, and how younger generations see themselves. The preconference gathering wasn’t just about support; it was about rewriting the narrative for women with bleeding disorders.
By the end of the conference, I was tired in the best way — the kind of tired that comes from being emotionally and spiritually fulfilled. Hope wasn’t just the name of the conference; it was something we built together, moment by moment, conversation by conversation. It was in the laughter that echoed throughout the hotel, the tears we didn’t have to explain, and the understanding that comes from being part of something bigger than ourselves.
We carry hope forward for earlier diagnoses, greater understanding, and better access to treatment. Our hope is for every girl and woman who’s ever been told, “You can’t have hemophilia.”
Hope is what brings us together and keeps us moving forward. But it’s not only found at conferences like this; it’s something we carry home and share with one another every time we speak up and say, “Yes, women bleed, too.”
As I left the hotel, I carried with me not only notes from the sessions, but also something much more valuable: a reminder that none of us is in this alone.
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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