Mental Health Focus Group- Acute Porphyrias

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 AIP, HCP and VP to participate in a focus group on the topic of creating mental health resources for the acute hepatic porphyrias (greatest challenges and struggles, what is missing in support they need, etc)!

Thursday, June 13
3:00-4:30 PM ET
Online

The moderators will be an MD focused on the bio/psycho/social connection and a registered social worker who is a porphyria caregiver.

United Porphyrias
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Mental Health Focus Group- Cutaneous Porphryias