Tuesday, November 21, 2017
The American Porphyria Foundation will be closed on in observance of Thanksgiving and will re-open for normal business hours on .
For emergency medical attention, please go to your nearest emergency room and contact your primary care physician. For all other issues, please direct your needs to the APF office staff via email. Your messages will be answered accordingly.
Desiree Lyon -firstname.lastname@example.org
Kristen Wheeden -kristen@porphyriafoundation.
Edrin Williams -edrinw@porphyriafoundation.
We hope that you enjoy this Thanksgiving holiday with your loved ones.
Please see below some additional announcements from the APF.
Want your physician to become better educated about your disease?
Personally invite them to this important symposium!!!
2018 Heme Biosynthesis and the Porphyrias: Recent Advances
Orlando, Florida -
This three day symposium will focus on the most recent findings on the molecular biology and regulation of heme biosynthesis and the clinical features, pathophysiology, and current treatment of the acute hepatic and erythropoietic porphyrias. Day 1 will be devoted to the clinical aspects and current treatments of each Porphyria. Days 2 and 3 will focus on the latest research findings on heme biosynthesis and emerging molecular-based treatments for the porphyrias. Also, there will be a special session for patients on the latest advances in the Porphyrias.
This symposium is open to all healthcare professionals including clinicians, researchers, nurses, genetic counselors, Junior Faculty, Pre/Post Doctoral students, fellows and medical students.
The Symposium offers up to 25.5 CME Credits. The Registration fee includes meals and the poster reception. Orlando has an international airport and outstanding attractions such as Disney World and Universal Studios. The hotel rates are attractive ($133/night plus tax, single or double), with parking, Internet, and resort fees included. The room rate is available for three days after the symposium, on a first come basis.
To share this information with your doctor, you can provide them with the registration link or print and share the attached brochure and take to your appointments with you: www.porphyriassymposium.
PDF File of Invitation: http://www.
porphyriafoundation.com/sites/ default/files/Heme- Biosynthesis-and-the- Porphyrias-Save-the-Date.pdf
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 anon-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!
The Alnylam Trials forGivosarinwill 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 713.266.9617 or 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!”
Edrin R. Williams, MHSA
What is δ-Aminolevulinic Acid Dehydratase Porphyria (ADP)? ADP is more severe than the other acute porphyrias and can present in childhoo...
Erythropoietic Protoporphyria What is erythropoietic protoporphyria? The word ‘erythropoietic’ means associated with red blood cells (‘...
Emergency Room Guidelines for Acute Porphyrias These Emergency Room Guidelines (download PDF) cover essential information for the emer...