Cutaneous Porphyria Videos for EPP, CEP, PCT
Life with Erythropoietic Protoporphyria
Two patients describe their lives with epp. english subtitles!!!!!!
Porphyria Awareness Week 2018 ~ Shadow Jumpers
Meet Jenna! Jenna lives with Erythropoietic Protoporphyria (EPP).
Porphyria - Katy's Choice, CEP
Dougie Spence ~ National Porphyria Awareness Week #1
Porphyria J ~ Porphyria Awareness Week 2017
"Seek Shade and Stay Happy!"
Porphyria J ~ Summer Shade 2016 (Full Season)
"Seek Shade and Stay Happy!"
Porphyria J ~ Summer Shade 2017 (Full Season)
"Seek Shade and Stay Happy!"
Congenital light disease EPP - treatment now!
Our European friends have created a small video to raise awareness about EPP and Scenesse.
NBC Dateline: Out of the Shadows ~ EPP
Dateline "Out of the Shadows" from Tommy Nguyen on Vimeo.
Rare genetic disorder forces woman to stay inside
Elyse Adams of Richmond has a condition called EPP
http://www.wmur.com/special-reports/rare-genetic-disorder-forces-woman-to-stay-inside/35276190