Media
Disappointed by the FDA’s ruling on an investigational EPP treatment
Porphyria News: A patient-voice commentary piece reflecting on the FDA decision and why the community remains hopeful while facing the emotional reality of the delay.
Two local women share life with rare sun condition, urge continued drug development
Boston 25 News: Ginger Gonsalves and Becky Kelliher joined Kerry Kavanaugh to discuss their experience living with EPP and their positive experience on bitopertin, and to advocate for approval of bitopertin.
He Grew Up Allergic to Sunlight. Now He Makes Wishes Come True for Kids with the Same Painful Condition
People: Craig Leppert shares his experience living with EPP, founding Shadow Jumpers, and what bitopertin has meant for people with this painful rare disease. The story helps bring the human side of EPP and treatment access into clear view.
A new drug has allowed two women to go in the sun for the first time in years
The Boston Globe: A strong human-interest story that helps explain what bitopertin can mean in real life for people with EPP.
USD student diagnosed with rare sun disorder inspired to pursue biochemistry career
ABC 10News San Diego: This story features Sophia McClellan, a University of San Diego student from Southern California living with EPP. It focuses on how EPP shaped her life and academic path