http://www.nbcnews.com/dateline/video/full-episode--out-of-the-shadows-469336131891
Nightline did as well
http://abcnews.go.com/Nightline/video/11-year-girl-allergic-sunlight-32199496
I guess most people don't pay much attention since its so rare. The FDA EPP Workshop later this month should hopefully help push the medical need.
https://www.eventbrite.com/e/scientific-workshop-for-erythropoietic-protoporphyria-epp-registration-24971245668
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