News

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Mar 23, 2017

National Porphyria Awareness Week (NPAW) is right around the corner.

NPAW: April 22 - 29, 2017

Mar 17, 2017

A downloadable Access to Care Toolkit is a resource designed to help patients living with Acute Intermittent Porphyria (AIP), Hereditary Coproporphyria (HCP), and Variegate Porphyria (VP) or their caregivers, loved ones and healthcare providers secure access to Panhematin at their preferred health facility.  We have recently learned of patients who are bein

Mar 06, 2017

We at the American Porphyria Foundation would like to thank everyone who attended the FDA Meeting.   Your presence was very important and showed the FDA how much support we have for new treatments.

 

Feb 26, 2017

Based on the agenda, we will be welcoming live questions at designated points during the meeting via live chat. Please comment/provide your questions in the chat section on the webcast.

Feb 24, 2017

Feb 22, 2017

Feb 15, 2017

Want your voice heard? Submit your story TODAY!

Rare Disease Week on Capitol Hill: February 27, 2017 - March 2, 2017

Feb 13, 2017

FDA Meeting Meet and Greet and Webcast Link!

The webcast link is ready!  Here is the link:

Feb 09, 2017

Jan 27, 2017

The APF has many exciting things in store for 2017!  Be sure to contact the APF office via phone, email, or Facebook to make sure your contact information is up to date and to learn more about current activities.  This way, you can be sure you are receiving the most up-to-date information about things like clinical trials, National Porphyria Awareness Week, Prot

Jan 19, 2017

We at the APF are getting very excited to see you all in Washington, D.C. in less than TWO MONTHS!  Many of you have already RSVPed directly to the APF...

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/

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