American Porphyria Foundation

06/03/2026

💜 A huge THANK YOU to everyone who joined us on May 17th for our Zoom session with Dr. Katherina Schmolly!

Showing up for yourself and this community takes courage — and we don't take that lightly. Whether it was your first time or you've been with us for years, it truly means the world. 🙏

We hope Dr. Schmolly's session left you with something valuable — a new insight, a question finally answered, or simply the reminder that you are not navigating porphyria alone.

In case you missed it or want to revisit — here are your resources:

📹 Meeting Recording:
https://drive.google.com/file/d/17m9iIHoztMEwhgZxyf4FAfXhYhlekYYz/view

📊 Want the Presentation Slides by Dr. Katherina Schmolly?
Attached to this post — save, download, and share freely! 💜

Please share this post with a fellow porphyria patient or caregiver who couldn't make it. Every share makes a difference. 💜

Our door is always open — reach out to us for absolutely anything. You are never alone in this. 💜

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💜 CONNECT WITH US
Follow us:

Join our Facebook Groups:
🔹 International Support & Education → https://www.facebook.com/share/g/18ujmKNvwY/
🔹 Porphyria Research → https://www.facebook.com/share/g/18SFKKjQSc/
🔹 Acute → https://www.facebook.com/share/g/1JXR4po2t6/
🔹 CEP → https://www.facebook.com/share/g/1D2ZXzmzdV/
🔹 EPP/XLP → https://www.facebook.com/share/g/1HV6mRNc5u/
🔹 PCT → https://www.facebook.com/share/g/1DK4U6dvAg/
🔹 Porphyria → https://www.facebook.com/share/g/1PHVz457LX/

💜 SPREAD THE WORD
👉 Click Here to Give 💜 — Recordati Donates $5 to the APF
https://www.porphyriafoundation.org — just click the homepage button. Every click supports patients, families & awareness.

05/25/2026

05/18/2026

🌍 May 18 is Global Porphyria Day 💜

Today, we honor every individual, caregiver, family member, and advocate impacted by porphyria. For many living with this rare disease, the journey can feel isolating, misunderstood, and invisible — but no one in this community should ever feel alone.

Global Porphyria Day is more than a date on the calendar. It is a reminder that awareness saves lives, support matters, and community changes everything. 💜

This year, help us shine a light on porphyria and stand beside patients around the world by joining the movement alongside GPAC :

✨ Watch and share our awareness video
💜 Support the APF Click Campaign
🌌 Light your home or community purple
📸 Wear purple & share your photos
👥 Connect with patients and families nationwide

You can also support the APF Click Campaign by visiting 👉 https://porphyriafoundation.org/ and clicking the donation button on our homepage. Recordati Rare Diseases will donate $5 to the American Porphyria Foundation on your behalf at no cost to you.

💜 Every click helps us continue providing education, advocacy, research support, and hope to the porphyria community.

✨ From classrooms and hospitals to city landmarks glowing purple in the night sky — every act of awareness matters. Every voice matters. Every patient matters.

📞 American Porphyria Foundation: 1-866-APF-3635 or 🔗 https://porphyriafoundation.org/

Together, let’s light up the world purple for everyone affected by porphyria. ✨💜

05/17/2026

💜 TONIGHT: Join the Global Porphyria Day Patient Zoom Meeting at 6 PM CST 🌍

The latest APF e-news is here! Celebrate Global Porphyria Day with patients, families, and advocates worldwide through tonight’s special Zoom meeting with Dr. Katharina Schmolly, plus community awareness activities and ways to get involved.

✨ Watch and share our awareness video
💜 Support the APF Click Campaign
🌌 Light your community purple
📸 Wear purple & post your photos
👥 Connect with patients and families nationwide

Everyone is welcome — bring a loved one!

📬 Read the full APF e-newsletter & join tonight’s Zoom meeting:
https://conta.cc/42zFgoH

💜

May 17, 2026 GLOBAL PORPHYRIA DAY VIRTUAL MEETING Join Patients Nationwide for a Special Virtual Discussion SUNDAY, MAY 17, 2026 6:00 PM CST Meet Dr. Katharina Schmolly Join the American Porphyr

05/15/2026

💜 Global Porphyria Day is almost here — and you can help support the Porphyria community in just ONE click. 💜

Here’s how to help:

1️⃣ Visit 👉 https://porphyriafoundation.org
2️⃣ On the homepage, click the purple donation button that says:
“Click Here and Recordati Will Make a $5 Donation on Your Behalf”
3️⃣ That’s it — Recordati Rare Diseases will donate $5 to the American Porphyria Foundation on your behalf at no cost to you!

Every click helps us:
✨ Raise awareness
✨ Support patients and families
✨ Advance education for the Porphyria community

Please click, share, and help us spread the word. Together, we can make a real impact. 💜

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.

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