Member Stories

  • Friday, June 14, 2019

Share your story! We want to hear from you...

The American Porphyria Foundation wants to invite you to share your story with the porphyria community. With permission, all stories will be featured on the APF Website. We will also feature select stories in our quarterly newsletter.

Stories 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.

We will be sending out a small token of our appreciation to the first 5 submissions.

We look forward to receiving your stories. The APF office hears regular feedback that the stories listed on our site have helped them feel less isolated and work toward diagnosis. Thank you for having a hand in helping others through your stories and words.

Send your stories to Edrin at