FOR SUPPORT, CALL 1-866-APF-3635 (273-3635)
Dr. Amy Dickey, Massachusetts General Hospital, is currently conducting a study that is investigating methods for measuring light exposure and symptoms in EPP.
This study is now open to teens 15 and older!
Control Subjects are needed!
Additional subjects WITHOUT EPP are needed to be involved in this study. Friends and family members are welcome to participate as a control. This is a great opportunity to support research.
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 and to volunteer.?
