For many of us, the biggest challenges are not the ones others can see. The uncertainty of when symptoms may flare, the long path to diagnosis, the need for ongoing self-advocacy, and the challenges of navigating an often misunderstood rare disease can be emotionally exhausting.
Join trauma-informed trainer and facilitator, Julie Wells, to explore the connection between chronic illness and emotional well-being, with a focus on the unique challenges faced by people living with porphyria.
This special educational session, Porphyria & Mental Health: What You Should Know, will cover:
The role of mental health in overall health
How living with porphyria can affect emotional well-being
Emotional regulation: what it is and how to use it
How past experiences shape our responses under stress
The impact of uncertainty, self-advocacy, and medical trauma
Recognizing and responding to your emotional needs
Crisis support resources and where to find help
Q&A will follow the presentation. Recording will be available after the webinar.
The details:
Date: Monday, August 31, 2026
Time: 7:00 PM ET (find your local time here)
Location: Zoom- register below for the link
Educational session only. Always confirm medication decisions with your healthcare team.