The "MOVE IT IN THE MOONLIGHT RUN" In Burlington, NC on August 28, 2015The location of the run is now determined: Chick-fil-A University Commons at 1477 University Dr. Burlington, NC 27215Please register and join the awareness run. It was organized at night so that people with photosensitive porphyrias can participate too.You can find out more details and information about the run on the website:"Remember....Research is the key to your cure!"
Tuesday, August 4, 2015
The "MOVE IT IN THE MOONLIGHT RUN" In Burlington, NC on August 28, 2015 UPDATED INFO***
Bright Ideas! This is a place for kids to learn from others with EPP, to share their own tips and tricks on things like what to wear...
Happy Thanksgiving everyone 2017
EXCITING ANNOUNCEMENT!! You can now receive FREE genetic testing (DNA) and counseling for acute porphyria. DNA can tell a person if the...
4. The Pain Scale Is Useless to Us There’s that pain scale, numbered one through ten, with increasingly dour expressions on the faces...