You're invited to a weekend of fun and connection with your porphyria family!
Porphyria Palooza is a weekend dedicated to the porphyria community. With an agenda and programming created by porphyria patients and caregivers, this event is all about bringing the community together for weekend of connection, learning, and fun in a supportive, porphyria-safe environment.
Coming together with as a community is life-changing. We can't wait to see you in October for what promises to be another incredible gathering 💜
Support to attend Porphyria Palooza. Travel assistance of up to $500/family is available. The number of stipends is limited. Learn more and apply.
Weekend Highlights
New for 2026! Meet One-on-One with a Porphyria Expert
Complimentary 20-minute appointments with porphyria experts Dr. Bruce Wang and Dr. Amy Dickey Yeung for Porphyria Palooza registrants. Learn more!
Porphyria Dance Party
Join us for an exciting evening filled with music, dancing, and games, celebrating our community and shared journey. Let loose, have fun, and connect with others in an inclusive, joyful environment.
Porphyria-Safe Amenities
Carefully selected to ensure a safe and enjoyable experience for all attendees, prioritizing your health and well-being throughout the event.
Porphyria Chill Zone
A dedicated space available around the clock for relaxation and conversation, providing comfort and connection throughout the event. Take a break, reflect, or chat with fellow attendees.
Interactive Sessions
Activities focused on navigating life's challenges, managing your healthcare journey, and embracing the future with porphyria.
Dedicated Kid's Zone
A supervised space with activities and games for children and young teens to connect and have fun while their parents attend the main sessions.
Friday Night Outing
Step into the spotlight and become the star of your very own game show! We'll be taking over the Game Show Studio for an evening of games, friendly competition and fun!
Educational Workshops & Porphyria-Specific Sessions
Gain insights on managing daily life, nutrition, emotional resilience, and porphyria research from experts and community members. Participate in discussions specific to your type of porphyria, offering targeted support and information.
What Past Attendees Have Said...
My favorite part is being surrounded by people who fully get you. I think in general we all spend so much time explaining to others what porphyria is and that it’s more than just a sun sensitivity. So nice to just feel “normal” as these great events. I’ve made great friends and unforgettable memories. Every detail is planned out and geared 100% towards us. We aren’t alone and being rare is really special.
-Courtney
It felt like a family reunion of lost loved ones connecting.
- Candace
I have never felt so understood in my life.
I have found my people.
-Ginger
I felt like a missing puzzle piece who had found its puzzle.
- Tommy
It felt like arriving in a place you didn’t know you’d been homesick for. Surrounded by people who understood the language your body spoke – who could name the unnamable parts of this disorder – you weren’t just managing anymore; you were learning, connecting, even laughing. The physicians were fountains of insight, and the community shared stories like a bustling night market – warm, generous, and full of wisdom. I left feeling seen, supported, and better prepared for the road ahead.
- Elsie
Countdown to Porphyria Palooza!
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Thank You to Our Sponsors
