Looking for answers for the EB community and finding hope in Brazil

Ever since my daughter was diagnosed with epidermolysis bullosa (EB) in December 2020, I’ve been on a journey. A crusade, really, to understand clinical trials and drug development, connect with nonprofits, and even enroll in a biotechnology management program — all in an effort to find a cure or something else to help my children.

If you read my last column, you’ll know I’m obsessed. I refuse to believe that this is how my children and others have to live, and I won’t stop until I find another way.

That pursuit has taken me to a lot of places, including São Paulo, Brazil, for the EB 2026 International Congress in January.

I’d known about the conference for some time and went back and forth on whether I should go. It felt extravagant. Wasn’t this more for the scientific community?

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Then, in November 2025, I hit another wall. Another treatment we had tried for my son’s nonhealing wounds stalled, and after a particularly defeating bandage, I texted my husband, who was traveling for work at the time. “I think I have to go to Brazil,” I wrote. He responded right away: “Do it.”

At first, it felt like a somewhat desperate decision. What was I really expecting to accomplish there? But I didn’t want to wait for information to trickle down. I wanted to hear directly from the experts.

In a disease like EB, time doesn’t feel like something you can afford. You want to act now, before things have a chance to get worse.

So I booked the trip using points we’d saved, not entirely sure what to expect. I gave myself a couple of days to reset before the conference started, and then on Jan. 20, I took a deep breath and checked in.

Just a mom trying to help my kids

I’ll admit, I was nervous. I knew a few people who would be there, but for the most part, I was going alone. As a natural introvert, that’s not always easy for me. I also wasn’t sure I belonged. I don’t have a scientific background. I’m a liberal arts major trying to understand genetics, proteins, and advanced therapies. I have no formal credentials in this space — I’m just a mom trying to help my kids.

But the experience was much more emotional, welcoming, and hopeful than I expected. Rather than feeling like an outsider, I felt included, seen, and valued.

I found myself in rooms with people whose work I’ve read and followed, including researchers, clinicians, and teams from companies working on EB therapies. What surprised me most was that they wanted to hear what I had to say, and that some of what I carried from our experience could be useful beyond my own children.

Living with a rare disease like EB can feel isolating, but being there made it clear we are not alone. There is an entire community — global, committed, and deeply invested — working toward better outcomes.

The conference itself reflected how complex EB really is. It’s often thought of as a skin disease, but it impacts far more than that, affecting multiple systems in the body. There were specialists across disciplines, from dermatology to gastroenterology, all contributing to the conversation.

And just as importantly, many of the people pushing progress forward are not only researchers or clinicians. They are patients, parents, and caregivers — people who have experienced the disease firsthand and refused to accept the status quo. Organizations like DEBRA International and others have been shaped by that kind of involvement.

It’s different from any other conference I’ve attended. In my professional world, events are often about networking, positioning, or closing deals. This felt different. There was a sense of urgency and purpose that’s hard to describe unless you’ve experienced it.

One night, I walked back to my room and saw some of the most respected leaders in the space sitting together at 1 a.m., still talking through ideas, therapies, and research. Still trying to solve problems. Still trying to move things forward.

Of course, EB wasn’t solved at the conference. There are still major challenges ahead, including issues like healthcare access and equity that deserve more attention. But I didn’t leave feeling discouraged. I left feeling hopeful.

What I took away most is that everyone has a role to play in this space. No matter how small it might feel, every contribution matters. Progress in rare disease comes from collective effort, collaboration, and persistence.

Yes, I came home with ideas, things to explore for my children’s wounds, their eyes, and even their dental care. But more importantly, I came home with a different kind of belief.

Progress is happening — I’ve seen it firsthand. It’s happening because of this community, one I feel incredibly grateful and honored to be part of.

Note: Epidermolysis Bullosa News 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 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 Epidermolysis Bullosa News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.