News

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May 18, 2016

May 04, 2016

 

Ariel Lager will be hosting a Patient Education Meeting in Philadelphia, PA on Saturday, June 11th.  The meeting will take place from 3:30-5:30 PM EST at the address shown below.  Bring your family and friends!  Everyone is welcome!

Apr 28, 2016

Apr 27, 2016

The 2016 APF Pet Beauty Contest Winners are...

Apr 25, 2016

The APF would like to extend a huge THANK YOU to everyone who participated in making National Porphyria Awareness Week such a huge success this year. With your help, the APF reached over 50,000 people via social media! The APF mailed out MANY packets of brochures and other educational materials for distribution.

Apr 22, 2016

The APF office staff is promoting National Porphyria Awareness Week 2016 today with our APF shirts!

Apr 19, 2016

The week we've been waiting for has finally arrived! People everywhere are doing a variety of activities to promote awareness and educate others in their communities!

 


Olivia Donaghy, Age 10, EPP

Apr 13, 2016

NPAW is the time of year that APF members spread porphyria awareness throughout their communities. It isn't too late for the APF to provide materials for your NPAW activity. We will also help you promote your event! ANY activity you partake in is important.

Apr 06, 2016

National Porphyria Awareness Week (NPAW) is April 16-23, 2016!

Mar 31, 2016

Mar 18, 2016

The APF Pet Beauty Contest has officially begun!  Our first entries are up on the APF website, with individual links to vote directly for your favorite pet.

Mar 16, 2016

Members of the Porphyria Consortium recently met in Houston, TX. We were fortunate to have many experts, Protect the Future (PTF) doctors, and research coordinators attend the meeting. These meetings are crucial for discussing research updates and other important things going on regarding porphyria.

Mar 09, 2016

Don't forget about the next Patient Education Meeting on Monday!

Date and Time: Monday, March 14, 2016, 6:30 PM CT
Location: 73 Saddlebrook Lane, Houston, TX 77024

 

*Presentation by World Renowned Porphyria Expert, Dr. Karl Anderson

Mar 03, 2016

Back by popular demand - we are hosting the 2nd Pet Beauty Contest. We can have FUN and FUNdraise to enhance Porphyria Awareness.

 

Mar 02, 2016

Don't forget about the next Patient Education Meeting in Houston, TX!

 

Date and Time: Monday, March 14, 2016, 6:30 PM CT

Location: 73 Saddlebrook Lane, Houston, TX 77024

 

Feb 17, 2016

We are looking for 3 more AIP patients, with a confirmed diagnosis, to volunteer for a research phone interview regarding patient needs, attacks, etc. 

Feb 12, 2016

Clinuvel has been granted Orphan Drug Status to investigate Afamelanotide for VP, HCP and CEP. 

Feb 08, 2016

Jan 29, 2016

Your 300 letters to the FDA regarding EPP were VERY effective. We are gaining ground! EPP is now on their radar. BUT we need your help. Now we need everyone to contact their congressmen and urge them to contact the FDA directly.

Jan 25, 2016

The APF is meeting with the FDA on March 7, 2016 to discuss the ACUTE PORPHYRIAS (AIP, HCP, VP). We ask that you and your family members please join us at this meeting to share your story and your needs.

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