News

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Nov 30, 2016

APF member and Social Media Coordinator, Amy Chapman, will be hosting the San Diego Patient Meeting on Friday, December 2, 2016 from 5:30-8:30PM PST.  There will be a meet and greet from 5:30-6:30PM, followed by a presentation by world-renowned porphyria experts.

Wyndham Garden San Diego
3737 Sports Arena Blvd.
San Diego, CA 92110

Nov 23, 2016

Nov 16, 2016

The recording for the Fda workshop for EPP meeting held on October 24th 2016 is now available to view.

It's in 2 parts:

Part 1: https://collaboration.fda.gov/p1lfeq3mcp4/

Nov 15, 2016

Patient Education Meeting in San Diego, CA!!

Friday, December 2, 2016 
5:30-8:30PM PST

Please see the urgent announcement below from Global Genes

 

Call Congress Today!

Day of Action for 21st Century Cures

A Partnership with Global Genes, EveryLife Foundation & NORD

Nov 09, 2016

APF member, Evelyn Jacobucci, will be hosting the next Patient Education Meeting on Friday, November 18, 2016 from 5:30-7:30 PM MST.  You are welcome to bring your friends and family, but please be sure to RSVP to the APF or directly to Evelyn at 303-989-2073 or 

Nov 05, 2016

Denver Patient Meeting, hosted by Evelyn Jacobucci, have been set!

The meeting is on Friday, November 18th from 5:30-7:30 PM MST. Please RSVP to Evelyn at 303-989-2073 or ejb2003@live.com.

Oct 27, 2016

Oct 18, 2016

The FDA Meeting for EPP is just around the corner! The FDA has distributed additional information for all registered attendees. The check in process is lengthy, so everyone needs to be sure to arrive to the FDA at 9AM on Monday, October 24th.

Oct 12, 2016

The final deadline to register to attend the FDA Meeting in person OR via webcast is THIS MONDAY, October 17th, 2016

Oct 08, 2016

The APF is busy preparing for the upcoming EPP meeting at the FDA on October 24th, 2016.  We are very excited about the large number of attendees and hope even more people RSVP to us in the coming weeks.

Sep 27, 2016

Recordati Rare Diseases Inc. is pleased to announce the launch of their new disease awareness website for Acute Intermittent Porphyria - "Is It AIP?" www.IsItAIP.com

Sep 21, 2016

Sep 14, 2016

Will you be attending the next APF Patient Education Meeting?  We hope so!  This is a unique opportunity to meet new friends who share your experiences with porphyria.  There will be presentations and a Q & A session for all attendees.

Sep 07, 2016

The invitations have gone out for the Chicago Patient Education Meeting on September 24th!  APF member Ruth Dee Bruno 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 presentations and a Q & A session for all attendees.

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.

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