We want to invite you to share your story with the porphyria community. The APF office receives regular feedback that the stories listed on our website have helped members feel less isolated and facilitated with diagnosis and treatment options.
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.
With permission, all stories will be featured on the APF website. We will also feature select stories in our quarterly newsletter.
We look forward to receiving your stories!
*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.