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

  • Friday, May 29, 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.? 

 

Call to Action - Help Those with CEP!

In this time of increased energy efficiency with LED light bulbs, patients with CEP are suffering. CEP damage is activated by all types of light that emit UV, especially LED, due to the effect of this high demand lighting. The safest light for those with CEP is incandescent light. Incandescent light bulbs DO NOT emit any UV, as they actually emit UVA rays. The issue is that these bulbs are increasingly difficult to find in stores with the move toward energy efficiency.

If you have any extra incandescent lights in your home or see them in a store - the APF will collect them from you and distribute the bulbs to our members with CEP.

Please email info@porphyriafoundation.org for shipping destination.

Thank you for your action that will have a big impact for your porphyria community friends.