Porphyria Consortium and Houston Patient Meeting Update
Members of the Porphyria Consortium recently met in Houston, TX. We were fortunate to have many experts, Protect the Future (PTF) doctors, and research coordinators attend the meeting. These meetings...
View ArticleThe 2016 APF Pet Beauty Contest is Underway!
The APF Pet Beauty Contest has officially begun! Our first entries are up on the APF website, with individual links to vote directly for your favorite pet.It isn't too late to enter YOUR beautiful...
View ArticleDesiree Lyon Howe to receive the NORD Rare Impact Award
Congratulations Desiree!! Desiree Lyon Howe will be receiving the Rare Impact Award in Washington, DC on May 17, 2016 for her many accomplishments to further porphyria research, awareness and...
View ArticleNational Porphyria Awareness Week is only 10 DAYS away!
National Porphyria Awareness Week (NPAW) is April 16-23, 2016!This is the time of year that APF members host events to spread porphyria awareness throughout their communities. The APF will assist by...
View ArticleNational Porphyria Awareness Week (NPAW) begins this Saturday, April 16th!
NPAW is the time of year that APF members spread porphyria awareness throughout their communities. It isn't too late for the APF to provide materials for your NPAW activity. We will also help you...
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National Porphyria Awareness Week is HERE
The week we've been waiting for has finally arrived! People everywhere are doing a variety of activities to promote awareness and educate others in their communities! Olivia Donaghy, Age 10, EPP
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Styling in APF Gear
The APF office staff is promoting National Porphyria Awareness Week 2016 today with our APF shirts!
View ArticleTHANK YOU for making Awareness Week 2016 a success
The APF would like to extend a huge THANK YOU to everyone who participated in making National Porphyria Awareness Week such a huge success this year. With your help, the APF reached over 50,000 people...
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The 2016 APF Pet Beauty Contest Winners are…
The 2016 APF Pet Beauty Contest Winners are... Winning Categories
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Philadelphia Patient Education Meeting and “Moo’ve It In The Moonlight” Race
Ariel Lager will be hosting a Patient Education Meeting in Philadelphia, PA on Saturday, June 11th. The meeting will take place from 3:30-5:30 PM EST at the address shown below. Bring your family...
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EPP Meeting at FDA Scheduled for October
The APF, with your help, got an EPP meeting with the FDA! The meeting is scheduled for October 24, 2016 from 10am - 4pm (EDT) at the FDA. The FDA will be observing how many people are interested in...
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Thank You for making the Philadelphia Patient Meeting a success
Over the weekend, Ariel Lager hosted a successful patient meeting in Philadelphia. There was a great turnout and Dr. Manish Thapar gave a wonderful presentation about the porphyrias before welcoming...
View ArticleScenesse® Distribution Begins in Europe This Week
Scenesse® Distribution Begins in Europe This WeekAlthough Scenesse® was approved by the EMA over a year ago, it has taken this long for EPP patients to start receiving the drug. Delivery will begin in...
View ArticleIntroducing the Premiere of Summer Shade, A YouTube Series About Porphyria
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...
View ArticleNext APF Patient Meeting Scheduled in Indianapolis
APF member Nichol Kirby invites you to a Patient Education Meeting in Indianapolis, IN! We hope you will take advantage of this opportunity to meet friends who share your experiences with porphyria....
View ArticleGET REGISTERED! EPP Meeting at FDA Scheduled for October 24th
The APF, with your help, got an EPP meeting with the FDA! We MUST show them the extreme need for treatment. The FDA will be observing how many people are interested in this meeting so we need as many...
View ArticleFDA accepts SCENESSE® clinical data package for NDA submission
Clinuvel prepares New Drug Application (NDA) for the treatment of erythropoietic protoporphyria (EPP) Executive summary: FDA concludes initial review of datasets on SCENESSE® in EPP FDA deems datasets...
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