At bleeding disorder conferences, we find our people

My uncle is a Scrabble nerd. Off the board, he can be a little socially awkward. Small talk doesn’t come easily to him. But put him in a room at a Scrabble tournament, surrounded by other people who understand the particular joy of a triple-word score, and something shifts. He lights up. He’s fluent. He is, unmistakably, in his element.

I know that feeling. I found it again last week at the National Bleeding Disorders Foundation‘s Bleeding Disorders Conference (BDC) in Orlando, Florida.

Recommended Reading

Aug. 18, 2026 by G Shellye Horowitz

Community is everything when you have a rare disease

A room full of people who already know

Walking into a space where I don’t have to explain myself brings a specific kind of relief. Saying “I have hemophilia B and von Willebrand disease” doesn’t require an embarrassing follow-up paragraph. Nobody’s eyes glaze over when I mention factor, or inhibitors, or the particular math of planning my week around a bleed.

At BDC, I don’t have to translate myself. I say a sentence, and the person across from me nods because they’ve lived some version of it, too. Maybe it’s their own diagnosis. Maybe it’s their kid’s. Maybe it’s a spouse, a sibling, or a patient they treat. But the nod is real, not polite.

That’s rarer than it should be. Most of my life happens in rooms where I’m the only one who bleeds differently — work meetings, waiting rooms, family gatherings where I’m still, decades later, the one explaining why I bruise like that or why I skipped the tea luncheon because Tampa felt too far. BDC flips that. For three days, I’m not the exception in the room. I’m just one more person at a very large, very loud, and very good family reunion.

Extended family, not small talk

That’s the word that keeps coming back to me: family. Not in a greeting-card way — in the specific way that family means people who’ve seen the harder parts and stayed anyway. The hallway conversations at BDC aren’t small talk. They’re catching up on someone’s transition out of pediatric care, or a new treatment that finally worked, or a kid who just made it through a rough joint bleed. They’re the kind of conversations that pick up exactly where they left off last year, even with people I see only once every 12 months.

I think about my uncle at his tournaments — how he doesn’t need an icebreaker with other Scrabble players, because the shared language already exists. That’s what this community gives me. I don’t walk in cold. I walk in already known.

Why the gathering matters as much as the sessions

BDC is, on paper, an education conference, with sessions on advancements in treatment, research, advocacy, and the latest in care. And that content matters; I’ve built more than one column around something I learned in a session there. But the thing I carry home isn’t usually a slide. It’s a face, a hand on my arm in the exhibit hall, or someone remembering a detail from a conversation we had a year ago and asking about it.

There’s real value in that connection that’s hard to quantify but easy to feel the absence of. Bleeding disorders can be isolating — rare enough that most people have never heard of yours, and chronic enough that explaining it gets exhausting. A conference like this doesn’t fix the isolation everywhere else in life. But for a few days, it interrupts it.

My uncle will tell you Scrabble tournaments aren’t really about the board. They’re about being around people who get it without being told. I understand him better every time I leave a bleeding disorders conference, because I feel the same thing walking out of Orlando that I imagine he feels walking out of a tournament hall — recharged, a little less alone, and already looking forward to the next one.

If you’ve never been to BDC, or you’ve been putting off going, I’d tell you what I’d tell anyone hesitating at the edge of a room full of their own kind of people: Go. You may not need the sessions. You may just need the family.

Note: Bleeding Disorders News is strictly a news and information website about the syndrome. 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 other 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 Bleeding Disorders News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to bleeding disorders.