If you’re looking for your people, they’ll be at this year’s Porphyria Palooza

I’m usually good at keeping secrets, but the surprises coming up at Porphyria Palooza have me bursting to share everything.

Just ask my husband, our three sons, and anyone on the team at the United Porphyrias Association (UPA), where I serve as president. They’ve all watched me struggle to keep mum as we put into action all of our patient community leadership’s ideas for an amazing event!

At Porphyria Palooza 2026, held Oct. 9-11, patients, caregivers, advocates, clinicians, researchers, and industry partners will gather in Kansas City, Missouri, for a weekend we’ve been planning for months. I can’t tell you all of the surprises, but I can share some things.

I can tell you that people will meet people, which sounds oddly simple, but for many in our community, it means everything. Because porphyrias are so rare, it’s not uncommon for patients to go years without meeting another person who understands what life with these genetic disorders is like. At Porphyria Palooza, attendees can walk into a room and hear two validating words, perhaps for the first time: “Me, too.”

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People living with many different types of porphyria can also share the same room. One might assume that we have little in common, but put us together, and the commonalities appear quickly: the long road to diagnosis, the struggle to be believed, the search for knowledgeable doctors, and the fierce determination to live fully.

We’ve planned for every one of those needs. We’ll have rooms that are safe from harmful light, rescue foods, and a “chill zone” for when things get overwhelming. We’ll also have a ton of speakers, a sound bath, and lots of coffee.

Some attendees will be traveling from afar, including one from Sweden! Porphyria doesn’t recognize borders, but neither does our community — our “porphamily,” as I call it.

Too often, the various groups involved in this community talk in separate rooms. But at Porphyria Palooza, everyone will share the same meals and conversations. To me, that’s where real progress starts.

Serious work and serious fun

I can also tell you that it will be meaningful. Our work at UPA is built on five pillars: research, education, awareness, advocacy, and support. Each of these will be woven into the weekend.

Attendees can meet one-on-one with porphyria experts. We’ll celebrate the launch of research initiatives that could transform how we manage porphyria. And we’ll make space for mental health, because living with a rare disease weighs on the heart and the mind just as much as the body.

I can also promise that it’ll be fun. There will be a party, a game show outing, and a tour of the Kansas City Chiefs’ stadium.

We’ll also have a Kids Zone. This is because somewhere in the group is a child who’s never met another kid with porphyria. By that Sunday, they’ll have friends who understand without a word of explanation. I watched that happen with my own son Brady, who was diagnosed with porphyria many years ago, and it still takes my breath away.

So many of our people will finally be together in real life: old friends, the members of our President’s Council, Ambassadors, and Junior Ambassadors, the latter of which inspire me every time they speak up. We’ll also present awards honoring some of the people who make this community stronger. (No, I can’t share who they are yet.) And the entire UPA team will be there, ready to hug you, help you, and probably cry with you.

To everyone who has helped with the planning, volunteered, donated, traveled, and simply shown up: Thank you. None of this happens without you.

When I look at everything we’ve packed into three days, I don’t see an event schedule; I see so much love! I see a community that refuses to wait for someone else to bring it together. And I see the answer to a question many families ask at the beginning of the journey: “Where are my people?”

They’ll be in Kansas City.

Note: Porphyria 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 Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.