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Showing posts from December, 2017

Patient Day In Orlando Florida ~ Its Free!

Patient Day In Orlando Florida ~ Its Free! Complimentary Parking & A Full Day of learning about the Porphyrias, Meeting Experts & Q&A session Meet other patients and caregivers!
Saturday January 13, 2018 Patient Day 10:00 am Welcome– D. Lyon-Howe, American Porphyria Foundation 10:05 am American Porphyria Foundation Overview Session 1- Heme Biosynthesis & the Erythropoietic Porphyrias Co-Chairs: E. Minder, MD & S. Keel, MD 10:15 am Heme Biosynthesis and the Porphyrias 101– J.D. Phillips, PhD 10:45 am Genetics 101– H. Naik, MS, CGC 11:00 am Erythropoietic Porphyrias Overview– M. Balwani, MD, MS 11:30 am EPP Research– J. Marcero 11:45 am Effective & Emerging Therapies for the Treatment of Erythropoietic Porphyrias– E. Minder, MD, MS 12:15 pm Q & A moderated by Co-Chairs 12:45 pm Lunch Session 2- the Acute Hepatic Porphyrias Co-Chairs: D.M. Bissell, MD & C. Levy, MD 1:45 pm Diagnosis of the Porphyrias– M. Badminton, MBChB, PhD 2:15 pm Acute Hepatic Porphyrias Overview– D.M. B…

PSA- Urgent Need for Acute Porphyria Patients Research

Dear friends, 
Please consider being a volunteer. The new drug , Givosarin has had great results thus far..Stopping Attacks is the objective. Ppl like, Michael Boone and Lakeisha Johnson have been telling you all about the great experience.
Your travel is all paid! Miami, Winston Salem, Boston, Galveston beach, San Francisco, Salt Lake City. , Birmingham, NYC, Philadelphia, Little you go..Meet an expert!
Please we urge all of you to contact the APF @  1-866-APF-3635 ask for Edrin!  
Get involved with Research today!

Part 2- Helping Patients Take Charge of Their Chronic Illnesses

Empowerment through education It's very difficult for patients to do what they don't understand, so the first step in equipping patients to take on a more active role in their health care is to educate them. Start by communicating to patients that education is perhaps as important to their health as getting their prescriptions filled. They need to know all they can about their disease. But just as patient-centered care can be more effective, patient-centered education is better education. The old education program, where you bring people in, sit them down and lecture to them, doesn't work any better than bringing them in, sitting them down and telling them to lose 20 pounds. Instead, the patient's needs should drive the education. For example, our center is testing diabetes education courses based entirely on questions from the audience. We do have a checklist of topics we want to cover, but we address those topics in the context of patient questions rather than through …

Light The Moment 2018

INTRODUCING A new program supported by the American Porphyria Foundation for children living with Erythropoietic Protoporphyria (EPP)

We invite you to visit Inside you will find tips and tricks on living with EPP, learn from fellow EPPers, read EPP Kid's stories, see new apparel and a very special opportunity withLIGHT THE MOMENT 2018! We even have a mascot! We welcome all new tips, stories and ideas. Please send to:
For comprehensive information on Erythropoietic Protoporhyria (EPP), please visit the
 American Porphyria Foundation website:

Part 1- Helping Patients Take Charge of Their Chronic Illnesses

Helping Patients Take Charge of Their Chronic Illnesses The best thing you can do for your patients with chronic diseases is to let them run with the ball. Martha M. Funnell, MS, RN Fam Pract Manag. 2000 Mar;7(3):47-51. Noncompliance has always been a significant challenge in chronic disease care, and it's one of the issues Family Care Network has had to confront as part of its diabetes quality improvement project, which FPM is following (see “Series overview”). This article is derived from a presentation the author made to the physicians and staff members of Family Care Network as part of that project. As you'll see, the author's solution to noncompliance is simply to render it obsolete. It's been said that, as health care professionals, we take credit for our patients' successes and blame them for our failures. How often have you heard a colleague say something like, “I got Mrs. Smith's HbA1c down to 7 percent, but Mr. Jones was noncompliant.” The truth is that, i…

Save 10% off your total NEW APF Merchandise

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.
Please note that all orders will go through APF employee Amy
This Week only save 10% off your total purchase!
Please follow the details below to complete your order. No items printed on the back of items due to hood covering.
****We DO NOT accept orders through Facebook****
Please submit your order and payment to or call 1-616-213-0030directly and leave a detailed message.
Please send an email and include the following: Full Name, complete mailing address, phone number.

For privacy purposes, please send in the email either the Visa/MC Number, Expiry Date, & CVV code on the back of your card. If you prefer I can contact you by phone. NO CC info is EVER kept on file!
Order: Please send your items that you would like to order by quantity & size for each T-shirt.