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Member Stories
📷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
Smile, Shop, and Support
Did you know that you can support to the APF by simply shopping on Amazon? The AmazonSmile Foundation donates a portion of eligible purchases to the charity/organization of your choice.
📷To start giving to the APF click here. Under the Amazon search bar you will see the word SUPPORTING in orange, change the organization to reflect the American Porphyria Foundation. Then, you are ready to start shopping and supporting! By simply buying your normal amazon purchases through AmazonSmile you are impacting those affected by porphyria.
Click here to learn more about AmazonSmile

Patient Education and Support Meeting- NYC
Icahn School of Medicine at Mount Sinai
07/10/19 5:30pm - 07/10/19 7:30pm
1428 Madison Ave. | 1st Floor | Division of Medical Genetics | New York, NY | Room: AB 1-31 | Signs will be provided for direction.


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