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
News
Click on the bold blue text below or on a topic listed on the left side of the page to read more.
Jul 05, 2017
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.
Apr 29, 2017
National Porphyria Awareness Week continues...
Apr 28, 2017
National Porphyria Awareness Week continues!
Apr 27, 2017
Louise Schlosser decided to educate doctors, nurses, and other healthcare professionals at the University of California, Irvine Medical Center about porphyria. Louise shared her story and left behind several resources provided by the APF to help educate many about this rare disease.
Apr 25, 2017
It's National Porphyria Awareness Week!
We have been getting more submissions on what people are doing to RAISE
PORPHYRIA AWARENESS!
Apr 23, 2017
Look at what's going on!
It's National Porphyria Awareness Week!
We have been getting submissions on what people are doing to RAISE PORPHYRIA AWARENESS! See their efforts below!
News
date:
Jul 21, 2017
date:
May 10, 2017
date:
Apr 22, 2017
