The American Porphyria Foundation (APF) is surveying US patients diagnosed with Erythropoietic Protoporphyria (EPP), including information on:
Your participation in this survey is voluntary. You may refuse to take part in or exit the survey at any time. Prior to the start of this survey, you will be asked to provide consent to allow the APF to share de-identified information with a pharmaceutical company. The American Porphyria Foundation is strongly committed to protecting the privacy of our members. Names are requested solely to ensure accuracy in our data collection and will not be provided as part of our feedback.
If you have multiple family members with EPP, please complete one survey per each family member.
If you would prefer to contact the APF with your responses, please email firstname.lastname@example.org or call 866-APF-3635.
Click HERE to complete the survey.
Thank you for your critical participation!