Short-term EPP Study

  • Friday, August 28, 2020

2 More Participants Needed!

Dr. Amy Dickey, Massachusetts General Hospital, is currently conducting a study that is investigating methods for measuring light exposure and symptoms in EPP.

The 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 general@porphyriafoundation.org for more information.?