News

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Apr 25, 2017

It's National Porphyria Awareness Week!

We have been getting more submissions on what people are doing to RAISE 

PORPHYRIA AWARENESS!

 

Apr 23, 2017

Look at what's going on! 

 

It's National Porphyria Awareness Week!

We have been getting submissions on what people are doing to RAISE PORPHYRIA AWARENESS! See their efforts below!

Apr 22, 2017

 

National Porphyria Awareness Week: April 22 - 29, 2017

 

Apr 21, 2017

The American Porphyria Foundation will be hosting a Patient Education 

Meeting on the beautiful emerald coast in Santa Rosa Beach, Florida on Wednesday, May 10, 2017. You are invited to attend! 

Apr 19, 2017

 

National Porphyria Awareness Week: April 22 - 29, 2017

 

Apr 18, 2017

National Porphyria Awareness Week: April 22 - 29, 2017

 

Apr 17, 2017

Let's Raise Porphyria Awareness!

 

National Porphyria Awareness Week: April 22 - 29, 2017

 

Apr 12, 2017

 

Cookie Cake anyone?

The Fleegel Family have participated in T.V. shows, FDA presentations and even decorated their very own porphyria cookie cake. YUM!!

Apr 10, 2017

Your contribution is important!

Since Porphyria is a rare disorder, your donations are the sole source of support for the APF.

 

Membership: The suggested annual tax deductible donation for membership is $35.00.

Apr 07, 2017

We are pleased to announce that the official APF T-Shirts have arrived!

 

What's your story?

Apr 06, 2017

Got yours? T-Shirts Available!

Cassie Tucker has organized and created a campaign where she designed a T-

Shirt to raise awareness for her loved one dealing with EPP. She will be 

Apr 05, 2017

National Porphyria Awareness Week: April 22 - 29, 2017

Mar 23, 2017

National Porphyria Awareness Week (NPAW) is right around the corner.

NPAW: April 22 - 29, 2017

Mar 17, 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 bein

Mar 06, 2017

We at the American Porphyria Foundation would like to thank everyone who attended the FDA Meeting.   Your presence was very important and showed the FDA how much support we have for new treatments.

 

Feb 26, 2017

Based on the agenda, we will be welcoming live questions at designated points during the meeting via live chat. Please comment/provide your questions in the chat section on the webcast.

Feb 24, 2017

Feb 22, 2017

Feb 15, 2017

Want your voice heard? Submit your story TODAY!

Rare Disease Week on Capitol Hill: February 27, 2017 - March 2, 2017

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