Take Action!
Your voice could be the one that changes everything.
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.
Share your story
Personal stories help others understand the real impact of EPP. Share your experience, your photos, and what bitopertin has meant to you, if applicable.
Contact your Legislators
A personal message to your senators and representative can help raise awareness and urgency. Constituents’ voices matter.
Send a message to the FDA
FDA leaders need to hear directly from patients and families. A short, respectful message can help show what delay means in real life.
Post to Your Socials
Share or repost from Patients for Bitopertin, or create your own post and tag us. Every post helps build visibility and urgency.
Stand with Patients: Sign your Name
Add your name to support people living with EPP and XLP and the effort to move bitopertin forward.
If You Are in Phase 3 APOLLO Study, Thank you! This Moment Matters
Your data strengthens the case for FDA approval. Remember to complete all study tasks promptly, respond to study coordinators and encourage others to stay active!