Treatment Testimonials
RequiredRequired Question(s)
The American Porphyria Foundation (APF) is gathering testimonials from members about their experience on various treatments. If you are interested in sharing your experience with us, please include your response using the text box below. 

By completing this form, you are authorizing the APF to share and/or publicize your testimonial. This information may be used to share on the APF website, featured in the quarterly newsletter or patient/physician education mailings. All testimonials will be de-identified to ensure privacy. 

If you have any questions, please contact the APF via phone or email. 

American Porphyria Foundation
Required 1.
Please enter the information indicated below.

First Name:
Last Name:
Email Address:

Required 2.

Please select the treatment that you are providing a testimonial for?

Panhematin for Acute Porphyria (AIP,VP,HCP, ADP)
GIVLAARI (givosiran) for Acute Porphyria (AIP,VP,HCP,ADP)
Scenesse (afamelanotide) for EPP
Required 3.

Describe your experience on this treatment - the length is up to you!


1000 characters left.