The American Porphyria Foundation will be hosting a Patient Education meeting on Saturday, September 16, 2017 in Anaheim, CA. See the invite below.
Click on the bold blue text below or on a topic listed on the left side of the page to read more.
Aug 15, 2017
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
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.