Let's Show the FDA the Future of EPP....Our Children!
- SEND A PHOTO by mail or email/scan of your child or you as a child. Choose a photo that shows the impact of this disease - either in full protective "gear", having a reaction, or avoiding a reaction. ** Please indicate if you would prefer your photo not be identifiable**
- Write simple comments or a letter expressing your concerns and how a treatment would impact your life. (Ideas: Need approval now! Suffering every day! Want to go to school just like everyone else! It hurts like_____ (fill in blank)! Approve Afamelanotide now!)
- Include your name, address, and contact information
- Send photos and comments to the APF office
American Porphyria Foundation
4900 Woodway Drive, Suite 780
Houston, Texas 77056