APF Member, Jared Ulmer, has started a vlog on YouTube called Porphyria J. It's a vlog devoted to creating community and awareness around Porphyria, specifically EPP, and how he lives with it during the sunniest and hottest season of the year. The first episode of the 13 week series, called Summer Shade, aired last night.Comment, Like, Share and Subscribe for new episodes every Tuesday!Jared will be covering a spectrum of topics and we hope you join him on his journey.Check out the Porphyria J YouTube Channel here: https://www.youtube.com/ channel/ UC7SYTLc6RSGptlHHQ8AapmgEpisode 1 of Summer Shade can be found here:"Remember....Research is the key to your cure!"
Thursday, June 30, 2016
Jared Ulmers vlog called Porphyria J Check him out
Bright Ideas! This is a place for kids to learn from others with EPP, to share their own tips and tricks on things like what to wear...
Happy Thanksgiving everyone 2017
EXCITING ANNOUNCEMENT!! You can now receive FREE genetic testing (DNA) and counseling for acute porphyria. DNA can tell a person if the...
4. The Pain Scale Is Useless to Us There’s that pain scale, numbered one through ten, with increasingly dour expressions on the faces...