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