News

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Jun 12, 2018

Givosiran Trials Deadline

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

Jun 11, 2018

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.

Jun 05, 2018

Opportunity to serve on an Advisory Board

May 31, 2018

The APF is on the Move...               

The American Porphyria Foundation proudly announces our new office location! 

May 16, 2018

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.

May 09, 2018

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

Apr 28, 2018

We have had an active Porphyria Awareness Week 2018!

 

Apr 27, 2018

Last chance to click, click , click!!!

Apr 25, 2018

We need more clicks!!!

Every single dollar earned through this campaign benefits Porphyria!!

Apr 21, 2018

#SpreadtheWord

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

 

Apr 13, 2018

 

 

Porphyria Awareness Week is ONE WEEK AWAY!

Apr 11, 2018

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

Mar 30, 2018

Mar 23, 2018

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

Mar 15, 2018

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

Feb 26, 2018

Feb 16, 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 .

Jan 26, 2018

 

Research Participants needed!

Givosiran Trials

Jan 05, 2018

EXCITING ANNOUNCEMENT!!

Jan 01, 2018

The APF is excited for all that is in store for 2018! We will continue with a relentless focus on research, awareness, physician education and member support programs. Stay tuned for information on clinical trials, DNA testing, patient resources, education meetings, programs for kids and so much more.

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