EPP/XLP Access to Care Interviews

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Written By United Porphyrias

Thank you to everyone who participated in this study! Once results are available, we will share them here.

United Porphyrias Association is recruiting 10 EPP and XLP patients to participate in a research interview. The goal of this research is to better understand the drivers and barriers to accessing care and treatment in EPP/XLP.

Eligibility requirements:

  • Reside in the US or Canada

  • Age 12+ (if under 18, consent of a guardian must be provided)

  • Confirmed diagnosis of EPP or XLP

Participants will be selected to provide a diverse range of experiences (location, age, gender, etc).

A $250 honorarium will be provided, by check, to those who are selected to participate after their interview is completed.

United Porphyrias
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EPP/XLP Questionnaire