American Porphyria Foundation

American Porphyria Foundation Official page, American Porphyria Foundation. Formed in 1982 by Desiree Lyon. The American Porphyria Foundation has supported the Porphyria community since 1983.

Our mission is to improve the health and well-being of all individuals and families impacted by Porphyria. We have maintained a relentless focus on education, advocacy, support services and research for the prevention, treatment and cure of the Porphyrias. The APF also serves as an advocate on your behalf to other public, private, and government agencies interested in funding research and educatio

nal programs. Our Scientific Advisory Board is made up of the world's foremost experts in Porphyria management, diagnosis, and research. They have written or approved the medical information our website

05/10/2026
💜 Porphyria Community — Save the Date! 💜📅 SUNDAY, MAY 17, 2026⏰ 6:00 PM CST | 7:00 PM ESTJoin the APF for a special Zoom...
05/06/2026

💜 Porphyria Community — Save the Date! 💜

📅 SUNDAY, MAY 17, 2026
⏰ 6:00 PM CST | 7:00 PM EST

Join the APF for a special Zoom Session with Dr. Katherina Schmolly, open to ALL porphyria types.

🔗 Zoom Link:
https://us02web.zoom.us/j/82339583373
🆔 Meeting ID: 823 3958 3373

Please note: this meeting will take place on MAY 17TH 💜

Ask questions, connect with the porphyria community, and be part of a conversation 💜

Whether you’re newly diagnosed, a longtime patient, or supporting a loved one — you are welcome here.

Zoom is the leader in modern enterprise cloud communications.

💜 Pittsburgh, We’d Love to See You There 💜Living with porphyria can feel isolating — but you are not alone. Join the Ame...
05/06/2026

💜 Pittsburgh, We’d Love to See You There 💜

Living with porphyria can feel isolating — but you are not alone.

Join the American Porphyria Foundation for a special evening honoring Global Porphyria Day alongside Dr. Roy Smith and APF Executive Director Tom Pletkovich.

🗓 Monday, May 18, 2026
⏰ 6:00–8:00 PM EST
📍 Oaklander Hotel | Pittsburgh, PA

Connect with people who truly understand the journey, share stories, ask questions, and find support within the porphyria community. 💜

Whether you’re newly diagnosed, a longtime patient, or supporting someone you love — this evening is for you.

📧 RSVP: general@porphyriafoundation.org
📞 866-APF-3655

Address

6605 33rd Street E, Ste C
Sarasota, FL
34243

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 6pm

Telephone

+18662733635

Website

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