Tuesday, November 7, 2017

Porphyria Post Important News

 
 
PORPHYRIA POST - Important News


PATIENT MEETING - Atlanta, GA
Members in the Atlanta, GA area are invited to attend a Patient Education and Support Meeting.  There will be a presentation and question/answer session with an on-site Porphyria expert (Dr. John Phillips).  Come meet old and new friends who share your experiences with Porphyria. Please RSVP to Edrin Williams in the APF office at 1.866.APF.3635 oredrinw@porphyriafoundation.org. We look forward to seeing you there! Please see the invite below for additional meeting details.
 Meeting Invite Atlanta

SET YOUR DVRs - Out of the Shadows
Emmy nominated Dateline NBC documentary "Out of the Shadows" will re-air on Wednesday, November 8, 2017 at 4:00 AM.  Please set your DVRs to watch this important documentary featuring EPP.

You can also watch the full "Out of the Shadows" episode here:



THIRD ANNUAL SHADOW RACE - Vernon, Texas


The Cook family is preparing to put on another fantastic barrel race.  As you may know, the Cook brothers, Cason and Caul, have EPP and have set a great example about enhancing awareness of the disease in their community.  The shadow race will be held in their hometown of Vernon, Texas. All proceeds will benefit the American Porphyria Foundation.

 Barrel Race

2018 HEME BIOSYNTHESIS AND THE PORPHYRIAS:  RECENT ADVANCES SCIENTIFIC CONFERENCE and CLINICAL DAY FOR PATIENTS!
Mark your calendars to join the American Porphyria Foundation and the Genetic Disease Foundation along with expert physicians from around the world!
January 12-14, 2018
Patient Mailer 
Click on the link below to view the agenda and register for Clinical Day for Patients. We look forward to seeing you there. If you have any additional questions, please contact the APF at 1.866APF.3635.


ALNYLAM TRIALS - Recruiting participants!

The Alnylam Trials for Givosarin will begin soon. The purpose of this study is to evaluate the use of this medication to prevent or reduce attacks and symptoms in those with an acute porphyria (AIP, HCP, VP, ADP). When enrollment opens, the APF staff will contact you with the name and phone numbers of the participating centers near you. If you are interested in participating for this exciting new trial, call the APF TODAY at 713.266.9617or 1.866.APF.3635 with your name, porphyria type and location to be put on the list TODAY!

"Remember....Research is the key to your cure!"


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