News

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Oct 19, 2017

Alnylam Trials

Oct 13, 2017

There are many different ways you can help with research, not just participating in a drug research trial.  Below is one of the very different but equally important ways to make a difference:

Oct 12, 2017

 

PATIENT MEETING - WASHINGTON, DC

 

Oct 11, 2017

Desiree Lyon Howe, APF Executive Director, was given the opportunity to enhance porphyria awareness by participating in a live radio interview with Health Professional Radio. Desiree spoke on the acute hepatic porphyrias, raising patient and physician education, misdiagnosis and much more.

Oct 03, 2017

 

2018 HEME BIOSYNTHESIS AND THE PORPHYRIAS:  RECENT ADVANCES  SCIENTIFIC CONFERENCE and CLINICAL DAY FOR PATIENTS!

 

Mark your calendars to join the American Porphyria Foundation and the Genetic Disease Foundation along with expert physicians from around the world!

Sep 20, 2017

                

 

CLINUVEL PROVIDES UPDATE ON SCENESSE® FDA FILING

 

Sep 01, 2017

The American Porphyria Foundation will resume normal business operations beginning Tuesday, September 6, 2017. We appreciate your thoughts, prayers, patience and understanding during this time. The APF staff remained safe during this storm and will be diligently working to get to your request by responding to your calls and emails.

 

Aug 30, 2017

Aug 28, 2017

The American Porphyria Foundation office will be closed today, Monday, August 28th due to the severe flooding in Houston, TX.  You can still reach the APF via email at porphyrus@porphyriafoundation.com or through individual staff emails.  The voicemail will be checked and calls will be returned on a regular basi

Aug 24, 2017

RESEARCH: YOU ARE NEEDED!

We are seeking patients to join our research studies. Get involved today!

 

Longitudinal Study:

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

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