Member Stories

  • Thursday, February 13, 2020

Share your story! We want to hear from you…

In preparation for Porphyria Awareness Week (April 18-25), the American Porphyria Foundation invites 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.

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. We look forward to receiving your stories.

Send your stories to Edrin at