News

CLINUVEL INITIATES VARIEGATE PORPHYRIA PROOF OF CONCEPT STUDY

Today CLINUVEL announced it has initiated a new clinical trial in variegate porphyria (VP), set to commence in Europe in 2019.

Click on the link below to view the announcement.

Volunteers Needed!

Welcome to the APF, Autumnlee!

We are excited to welcome aboard our newest APF team member, Autumlee Meyer.

Hurricane Florence

Holiday Office Closure

Harvoni Study - PCT

Patient Education and Support Meetings

#ApproveScenesse

Panhematin Study

Harvoni Study - PCT       

Last Call - Request Priority Review of Scenesse

URGENT NEED FOR LETTERS

Request Priority Review of Scenesse

URGENT NEED FOR LETTERS       

Givosiran Trials Deadline

The life changing Givosiran research trials will be closing for more acute porphyria patients on Friday, June 29.

Dr. Bruce Wang (Porphyria Expert, UCSF) and Mary Schloetter (AIP) completed seventeen back-to-back interviews with a variety of media outlets during a satellite media tour early morning during Porphyria Awareness Week, which was arranged by Alnylam Pharmaceuticals.

Opportunity to serve on an Advisory Board

The APF is on the Move...               

The American Porphyria Foundation proudly announces our new office location! 

2018 President's Award

Each year, the American Porphyria Foundation selects a recipient who has gone above and beyond in support of our foundation and the porphyria patient community. We are proud to present the following individuals with the President's Award 2018.

Rare on the Road - Coming to Houston, Texas June 9, 2018

We have had an active Porphyria Awareness Week 2018!