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Cutaneous Porphyria Videos

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




News Channel 5 Network: Drug Helping Patients With EPP



ABC News: 11-Year-Old Girl 'Allergic' to Sunlight ~ (EPP)




Rare genetic disorder forces woman to stay inside

Elyse Adams of Richmond has a condition called EPP