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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!

Last chance to click, click , click!!!

We need more clicks!!!

Every single dollar earned through this campaign benefits Porphyria!!

#SpreadtheWord

We need your click on www.porphyriafoundation.org to #SpreadtheWord and raise funds for the APF!

Porphyria Awareness Week is ONE WEEK AWAY!

It is with great sadness we share that Desiree's beloved husband, Dr. Richard James Howe, passed away Monday, March 20. He passed in peace as he lived his life. Please take a moment and read about his life in the Obituary below.

Richard James Howe, PhD

Happy Easter!

Porphyria Awareness Week will be held on April 21-28, 2018.

Porphyria Awareness Week will be held on April 21-28, 2018.

IMPORTANT NOTICE!

If you have had problems receiving Panhematin treatment for any reason, please contact Desiree Lyon Howe, APF Executive Director, at lyonapf@aol.com .

Research Participants needed!

Givosiran Trials

EXCITING ANNOUNCEMENT!!