You are Needed for a Short-term EPP Research Study!

  • Friday, May 15, 2020

Dr. Amy Dickey, Massachusetts General Hospital, is currently conducting a study that is investigating methods for measuring light exposure and symptoms in EPP. Her study may eventually help patients predict symptoms using a wearable smartphone-based device. This could help patients better manage the disease with reduced anxiety. Patients are answering a brief symptom and light exposure survey every day for two months. For one month, patients will wear a small light sensor. Please contact the APF at 866-APF-3635, or info@porphyriafoundation.org for more information and to volunteer.