News

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Jul 27, 2016

Nichol Kirby will be hosting the Indianapolis Patient Education Meeting THIS SATURDAY, July 30th!  Patient Meetings are a great opportunity to meet others with porphyria and share your story.  There will be a presentation and a Q & A session for all attendees.  Bring your friends and family!  We can't wait to see you all there!

Jul 22, 2016

The Dateline NBC documentary "Out of the Shadows" featuring EPP has been nominated for an Emmy Award!  The APF received this great message from an NBC producer:

Jul 21, 2016

The invitations have gone out for the Indianapolis Patient Education Meeting on July 30th!  APF member Nichol Kirby will be hosting this meeting and we hope you will take advantage of this opportunity to meet new friends who share your experiences with porphyria.  There will be a presentation and a Q & A session for all attendees.

Jul 18, 2016

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 satisfactory for submission of New Drug Application Pre-NDA meeting with FDA to be scheduled to discuss timelines and procedure Clinuvel will request rolling review of

Jul 13, 2016

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 people as possible to attend.

Jul 06, 2016

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.  There will be a presentation and a Q & A session for all attendees.

Jun 30, 2016

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.

Jun 22, 2016

Scenesse® Distribution Begins in Europe This Week

Jun 16, 2016

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 questions from the group.  Alnylam Pharmaceuticals also made a great presentation about their current research studies. 

Jun 13, 2016

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 this meeting so we need as many people as possible to attend.  We MUST show them the extreme need for treatment.  Great work, everyone!  See below for more details!

Jun 03, 2016

May 18, 2016

May 04, 2016

 

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 and friends!  Everyone is welcome!

Apr 28, 2016

Apr 27, 2016

The 2016 APF Pet Beauty Contest Winners are...

Apr 25, 2016

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 via social media! The APF mailed out MANY packets of brochures and other educational materials for distribution.

Apr 22, 2016

The APF office staff is promoting National Porphyria Awareness Week 2016 today with our APF shirts!

Apr 19, 2016

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

Apr 13, 2016

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 promote your event! ANY activity you partake in is important.

Apr 06, 2016

National Porphyria Awareness Week (NPAW) is April 16-23, 2016!

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