Mental Health Focus Group- Cutaneous Porphryias

Filled
Written By United Porphyrias

Thank you to everyone who participated in this focus group!

Preliminary results from this focus group were presented at the 2024 International Congress of Porphyrins and Porphyria in Pamplona, Spain. Read more about the findings here.

Filled-We are looking for people with EPP, XLP, CEP and PCT to participate in a focus group on the topic of creating mental health resources for the cutaneous porphyrias (greatest challenges and struggles, what is missing in support they need, etc)!

Tuesday, June 4
6:00-7:30 PM ET
Online

The moderators will be an MD focused on mind-skin medicine and a registered social worker who is an EPP caregiver.

United Porphyrias
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