News

Click on the bold blue text below or on a topic listed on the left side of the page to read more.

Aug 26, 2016

Aug 24, 2016

The next Patient Education Meeting has been scheduled!  Ruth Dee Bruno will be hosting the meeting near the Chicago area.  This is a great opportunity to meet others who share your experiences.  Be sure to RSVP quickly to reserve a spot for you, your family, and your friends!  Everyone is welcome!

Aug 18, 2016

Aug 10, 2016

Health insurance is one of the most important and possibly expense services that we buy, yet we are often confused or unsure of what we have purchased.  As healthcare consumers it is important that we understand how health insurance works, the differences in plan types and features, and patient rights.  Individuals with chronic diseas

The APF will be traveling to the Washington, D.C. area for an important EPP meeting with the FDA!  The FDA is hosting this meeting, so we MUST show them the extreme need for treatment.  The FDA will be observing how many people are interested, so we need as many people as possible to attend.

Aug 03, 2016

The APF would like to extend wholehearted congratulations to esteemed porphyria expert, Dr. Peter Tishler, on his recent retirement.  Dr. Tishler has been a treasured member of the APF and our Scientific Advisory Board for many years and we THANK YOU for your invaluable service to the porphyria community!

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

Subscribe to The American Porphyria Foundation: News