News

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!!

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.

The American Porphyria Foundation will be closed for the Christmas and New Year holidays beginning Monday, December 25, 2017 and will re-open for normal business hours on Tuesday, January 2, 2018. 

INTRODUCING

We are excited to share with you the new APF Winter Items for sale.

Our hope is that you all will purchase and wear APF merchandise to help raise awareness about Porphyria.

FRESH NEW LOOK...

#GivingTuesday 

The American Porphyria Foundation will be closed on Wednesday, November 22, 2017 in observance of Thanksgiving and will re-open for normal business hours on Monday, November 27, 2017.

Want your physician to become better educated about your disease? 

Personally invite them to this important symposium!!! 

PORPHYRIA POST - Important News

Upcoming Events and Rearch:

PATIENT MEETING - Atlanta, GA

INTERESTED IN HOSTING A PATIENT EDUCATION AND SUPPORT MEETING?

Givosiran Trials

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: