Video Member Stories

Caregiving Their Own Way: Meet Keili - Wife & Caregiver


Rose and Collin Living with the Intense Pain of Porphyria


First Do No Harm: Amanda's Story ~ VP


Tracy Yelen AIP Patient Story


Lisa Shaquille Miller ~ AIP


Amy Chapman AIP Patient Story


Desiree Lyon - AIP Patient Story

Life with Erythropoietic Protoporphyria


Porphyria - Katy's Choice, CEP


Porphyria J ~ Summer Shade 2016 (Full Season)

"Seek Shade and Stay Happy!"


Porphyria J ~ Porphyria Awareness Week 2017

"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.


Rare genetic disorder forces woman to stay inside

Elyse Adams of Richmond has a condition called EPP