Attention EPP Patients and Caregivers!

EPP Patients and Caregivers!


Stay tuned for an important survey about the diagnostic delay patients with EPP experience.

The Porphyria Team at Mount Sinai in New York City is looking to find out about this diagnostic delay to better educate pediatric physicians to recognize the signs and symptoms of EPP.  This will be a very short one-time survey.

Contact the APF today to make sure that your information is correct in the database.  
Phone: 1.866.APF.3635    E-mail:

Please stay tuned for more information.


"Remember....Research is the key to your cure!"