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

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