News

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Aug 15, 2017

The American Porphyria Foundation will be hosting a Patient Education meeting on Saturday, September 16, 2017 in Anaheim, CA.  See the invite below.

Aug 04, 2017

NEW RESEARCH STUDY FOR PORPHYRIA CUTANEA TARDA (PCT)

 

Jul 27, 2017

APF Membership: Guess what? It's FREE!

Jul 19, 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 being denied

Jul 12, 2017

Tired of being called a VAMPIRE, CRAZY or a DRUG SEEKER?

 

 

Jul 05, 2017

Recordati Rare Diseases is launching a new 350mg dosage strength of Panhematin.  This is the first significant change to Panhematin since it was approved over 30 years ago.  The prescribing instructions have numerous updates including the removal of the boxed warning, addition of clinical studies section, updates to the adverse events section, and changes to dosing

Jun 21, 2017

The American Porphyria Foundation will be hosting a Patient Education meeting for Erythropoietic Protoporphyria on Friday, July 21, 2017 in Craryville, NY at Camp Sundown. See the invite below.

Jun 15, 2017

THE FUTURE OF THE EPP PHOTO CAMPAIGN​

Jun 08, 2017

The International Conference is a gathering of porphyria experts and researchers from around the world and is held every two years.  This conference provides them with the opportunity to share their research and discuss the present and future therapies, case studies, etc.

Jun 07, 2017

EPP DELAYED DIAGNOSIS SURVEY

Jun 06, 2017

PORPHYRIA POST 

New subject line, same great information from the APF!

Jun 02, 2017

MEDICAL MOMENT: IMPORTANT NEWS

May 30, 2017

THE FUTURE OF EPP...OUR CHILDREN! 

May 19, 2017

Dear EPP Community,

May 17, 2017

May 16, 2017

Dear EPP Community,

May 10, 2017

EPP Patients and Caregivers!

 

Stay tuned for an important survey about the diagnostic delay patients with EPP experience.

May 09, 2017

The American Porphyria Foundation will be hosting a Patient Education meeting tomorrow Wednesday, May 10, 2017 in Santa Rosa Beach, FL. See the invite below.

May 03, 2017

The American Porphyria Foundation will be hosting a Patient Education meeting on Wednesday, May 10, 2017 in Santa Rosa Beach, FL. See the invite below.

Apr 30, 2017

We, at the American Porphyria Foundation, would like to THANK YOU for participating in National Porphyria Awareness Week. We are very grateful for everyone who submitted their photos and notified us of their awareness activities.

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