News

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Jan 10, 2017

We're thrilled to announce a new partnership that will bring our resources in front of The Mighty's wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site.

Jan 01, 2017

The American Porphyria Foundation wishes you a Happy, Healthy New Year! 

We are blessed to know each of you and we are looking forward to the exciting things to come in 2017.

Sincerely,

Dec 25, 2016

 

We wish you a Merry Christmas, Happy Holidays and a Happy, Healthy New Year!

 

Dec 21, 2016

Dec 16, 2016

Please see the message below from Desiree Lyon

The APF has received a request from the organizers of a life sciences conference to take place in Orlando, Florida in May, to recommend a patient speaker for a panel.  This should be someone with clinical trials experience who would be willing to share his/her story.

Dec 07, 2016

Following the FDA meeting for EPP that was held in October, the FDA opened an online public docket for EPP people to submit comments.  This docket is open to attendees of the meeting AND those that were unable to attend in person.  The FDA is particularly interested in hearing patients' perspectives on the questions discussed during the workshop.

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

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

Patient Education Meeting in San Diego, CA!!

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

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.

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