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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

 

http://www.newschannel5.com/news/medical-news/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

 

http://www.wmur.com/special-reports/rare-genetic-disorder-forces-woman-to-stay-inside/35276190