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Valuable, Exclusive Porphyria Education
As you know, every year the APF distributes thousands of educational
materials free of charge to our Sponsors and the public. Premium
materials like the ones on this page are more expensive to
produce, so we kindly ask you to help us cover these costs with
your generous donations. You can purchase these items over the
internet securely via
PayPal, or simply call us at 713-266-9617 with your Mastercard
or Visa handy. We cannot accept orders via email. Thank you!
| Patient Education Brochures |
US residents: The
following brochures are $1.30 each, free shipping.
International residents: The
following brochures are $2.50 each, free shipping.
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| Overview of Porphyria |
Panhematin |
Management of the Acute
Porphyrias |
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| Diet and Nutrition |
Erythropoietic Protoporphyria |
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| Replica King
George Letter |
King George and You
You Can Own a Piece of History
 Free
shipping!
- $50.00 for US residents
- $60.00 for International residents
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One of our Sponsors recently purchased a handwritten letter
by King George III from a reputable dealer in rare documents.
He did so that other Sponsors of the APF might have a superb
replica for a donation to the APF.
King George might be your relative since it is now
known through scientific studies that King George had porphyria,
too. He sat on the English throne for sixty years.
Interestingly, some historians firmly believe that his illness
so impacted the English rule of the Colonies that the powerful
British troops lost the Revolutionary War.
Included in this package is:
- A replica of the letter written
in George's own hand
which is reprinted on high quality paper similar to the
original.
- A transcription of the letter
- A brief history of King
George III and the impact of his porphyria illness on his
own life and British rule.
These
items are suitable for framing and are enclosed in an
attractive folder.
Order by selecting quantity and shipping
location:
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Primary Care
Physician/Emergency Room Kit for the Acute Porphyrias
(AIP, VP, HCP, ALAD) |
 For acute porphyrias only
Free shipping!
- $30.00 for US residents
- $40.00 for International residents
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Essential documents and ER instructions
you shouldn't be without! The Kit includes:
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Safe/Non-safe Drug List. The next time the
ER staff asks you if you're allergic to any meds,
hand them this and they'll know for sure.
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Porphyria Specialist List. Contact information
of porphyria experts, for physicians only.
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ER Information Form. At-a-glance sheet for
ER personnel to record your essential admission information.
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Porphyria Test Results Form.
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Information ER physicians need to know. To accurately and confidently
administer heme therapy.
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Instructions for Shipping Samples for Porphyria Testing. Includes
information on processing and shipping samples, an order
form for testing, and a primer on lab testing for porhyrias.
- Review
article: Recommendations for the Diagnosis and Treatment
of the Acute Porphyrias (reprinted from Annals of
Internal Medicine, March
2005). This article reviews the
current medical treatment guidelines for the acute porphyrias.
Especially vital for physicians unfamiliar to porphyria
you're likely to encounter in the ER. Good reading for your
primary care doctor too.
Order by selecting quantity and shipping
location (the packet is in English):
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| Erythropoietic
Protoporphyria (EPP) Working Kit |
Free
shipping!
- $30.00 for US residents
- $40.00 for International residents
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Essential education produced exclusively for EPP patients.
The Kit includes:
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EPP brochure and education. Important
background information about EPP, management
strategies, photosensitivity, and ways to avoid
attacks.
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ER Information Form. At-a-glance sheet
for ER personnel to record your essential admission
information.
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List of leading APF EPP specialists and their
contact information.
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Sun Precautions catalog, including
medical solutions
for sun sensitive people.
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Samples of light-protecting sun block and
accompanying product information.
Order by selecting quantity and shipping
location (the packet is in English):
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| Porphyria
DVD |
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Free with new paid APF Sponsorship
Get this valuable DVD for FREE. Sign up NOW!
Free shipping!
- $20.00 for US residents
- $25.00 for International residents
Watch and listen to porphyria patients share their stories
and learn how they cope with the challenges of living with
porphyria.
You'll also meet some of the world's foremost porphyria
experts as they take you inside the laboratories that are
working hard toward a cure.
Order by selecting quantity and shipping
location (the DVD is in English)
Preview
the video here
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| Porphyria Book |
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Free shipping!
- $20.00 for US residents
- $30.00 for International residents
Porphyria, A Lyon's Share of Trouble, by
Desiree Lyon Howe, the APF Executive Director, discusses Desiree's
personal accounts of living with porphyria as well as stories
of many other patients whom she has helped over the past twenty-five
years.
You will gain tremendous insight and guidance from Desiree's
experiences as well as important information that can help
you navigate the complex world of porphyria.
Order by selecting quantity and
shipping location (the book is in English):
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The APF is not responsible for the interpretive translations in other languages.
The information contained on the American Porphyria Foundation (APF) Web
site or in the APF newsletter is provided for your general information only.
The APF does not give medical advice or engage in the practice of medicine.
The APF under no circumstances recommends particular treatments for specific
individuals, and in all cases recommends that you consult your physician or
local treatment center before pursuing any course of treatment.
All information and content on this Web site are protected by copyright. All
rights are reserved. Users are prohibited from modifying, copying,
distributing, transmitting, displaying, publishing, selling, licensing,
creating derivative works, or using any information available on or through
the site for commercial or public purposes.
The American Porphyria Foundation (APF) Tax Forms 990 are readily available to the public. If you would like a copy, please contact the APF: 4900 Woodway, Suite 780, Houston, TX 77056. Toll free: 1.866.APF.3635.
Join the APF—Your
donations help support patient and physician education as
well as porphyria research. Learn
more...
© 2007 American Porphyria Foundation.
All Rights Reserved. |
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