Contact UPA at 800-868-1292 or info@porphyria.org
Dr. Amy Dickey is a physician at Massachusetts General Hospital (MGH) and an Instructor of Medicine at Harvard Medical School (HMS) with internal medicine and pulmonary and critical care training pursuing a career in clinical and translational porphyria research. Her personal history with porphyria began at age 3, when she started to have painful sunlight sensitivity from erythropoietic protoporphyria (EPP). However, she was not diagnosed until age 13.
During her fellowship, she initially studied basic immunology related to HIV-TB co-infection. Concurrently, however, her personal history with EPP and her increasing involvement with the Porphyrias Consortium convinced her of the great need for researchers studying porphyria. Her research focuses on measuring light sensitivity in EPP, as well as understanding the reasons for differences in light sensitivity between patients.
In addition to research, she has also served as a spokeswoman for the porphyria community, speaking to the Food and Drug Administration about porphyria, writing an opinion piece in STAT news, giving lectures to physicians about porphyria, and presenting at porphyria patient support group meetings. She is also co-director of a newly started porphyria clinic within the MGH division of hematology.
