This moment calls for more than disappointment. It calls for action.

People living with EPP and XLP, and the people that love them, know what is at stake. Every delayed decision means more missed experiences, more isolation, and more time spent waiting for a treatment that could help make everyday life more possible. The patient and family voice matters, and it matters now.

There are several ways to help build urgency, increase visibility, and push for a timely path forward for bitopertin. Whether you share your story, speak out publicly, contact decision-makers, or support the clinical trial process, your voice can make a difference.