American Porphyria Foundation

09/01/2026

💜 SEPTEMBER IS NATIONAL SU***DE PREVENTION AWARENESS MONTH.

Living with porphyria can affect more than the body. Unpredictable attacks, chronic pain, fatigue, nausea, isolation, and the long road to diagnosis can take a serious emotional toll.

For some people living with acute porphyria, neurological and psychiatric symptoms may also occur during attacks. That is why recognizing changes in mental health—and taking them seriously—is an important part of patient care.

At the American Porphyria Foundation (APF), we want our community to hear this clearly:

Your mental health matters. Your life matters. You do not have to struggle alone. 💜

If you are living with porphyria and struggling emotionally, reach out to someone you trust, connect with your healthcare team, and seek professional mental health support. Asking for help is a sign of strength.

🚨 If you or someone you know is in crisis:
📞 Call or text 988 — Su***de & Crisis Lifeline
💬 Crisis Text Line: Text HELLO to 741741

Healthcare professionals can also learn more about recognizing and managing the neurological and psychiatric manifestations associated with acute porphyrias through APF's Emergency Room Guidelines:

🔗 : https://porphyriafoundation.org/for-healthcare-professionals/emergency-room-guidelines-for-acute-porphyrias/

Share this post. Check on someone you love. Start the conversation. You never know who may need to hear that they are not alone. 💜

***dePreventionAwarenessMonth ***dePrevention

08/24/2026

08/20/2026

🥗 With Acute Porphyria, nutrition isn’t just about eating “healthy”—it can be part of managing your condition.

For people living with Acute Intermittent Porphyria (AIP), Hereditary Coproporphyria (HCP), Variegate Porphyria (VP), or ALAD Porphyria (ADP), extreme dieting, prolonged fasting, and severely restricting carbohydrates may increase the risk of an acute attack.

The goal isn’t to overload on carbs. It’s balance, adequate nutrition, and avoiding prolonged fasting or extreme diets.

💜 Living with Porphyria means understanding what your body needs—and having reliable information can make that feel a little less overwhelming.

📌 Save this post and share it with someone in the Porphyria community who may need it.

🌐 Learn More: https://porphyriafoundation.org/for-patients/diet-and-nutrition/

08/20/2026

We honor the power of patient advocacy, community, and every voice that helps make porphyria known. ❤️

For National Patient Advocacy Day on August 19, the American Porphyria Foundation celebrates the patients, families, advocates, physicians, and researchers who create meaningful change for the porphyria and rare disease community.
For 40+ years, advocacy has been at the heart of APF's mission — helping patients find answers, providing family support, advancing research, and pushing for better policies and treatments.

We also honor Desiree Lyon, APF Co-Founder, whose courage and decades of advocacy built a legacy that still impacts patients and families today.

Every story shared raises awareness. Every voice strengthens our community.

❤️ Your story. Your voice. Your impact.

Share this post, tell your story, or donate to help move porphyria advocacy forward.

🌐 Donate Today: www.porphyriafoundation.org/get-involved/donate/

08/19/2026

YOU ARE WHY WE ADVOCATE. 💜

Behind every porphyria diagnosis is a person who fought to be heard.

This National Patient Advocacy Day, August 19, we honor Melissa "Missy" Nagin, Adeline Tonhaeuser, Oliver Stanek, and every member of the porphyria community whose courage reminds us why this work matters.

For 40+ years, the American Porphyria Foundation has stood beside patients and families — advancing education, support, and research toward better treatment and a cure. But it takes all of us.

Your gift helps APF connect families with resources, educate physicians, and fuel the research that moves our community forward.

❤️ DONATE TODAY: www.porphyriafoundation.org/get-involved/donate/

Share this post. Start a conversation. No one facing a rare disease should have to fight alone.