New Member Stories Needed!

  • Friday, March 19, 2021

We want to invite you to share your story with the porphyria community. Stories submitted should be about 500 – 2000 words and full of your personality. Make sure to include information about your specific porphyria type, your diagnostic journey and how this disease has impacted your life. Please also attach a recent photo. Send your stories to Edrin at along with with a recent photo and the attached APF Waiver.

*If you already have a story listed on the APF Website and would like to edit it or submit a new photo, please share the updates with Edrin. 

Current Stories Can be Found on The APF Website