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The APF is dedicated to improving the
health and well-being of individuals and families affected
by porphyria.
The APF:
• Enhances public awareness
• Develops educational programs and
distributes educational
materials
• Supports research |
Become
a Sponsor and GET INVOLVED
When you join the APF,
you become partners with an international team of healthcare
professionals and Sponsors committed to improving the health
of individuals and families affected by porphyria. For
a nominal fee, you'll receive many valuable benefits
of Sponsorship including a DVD
on porphyria, e-mail
updates, educational materials, APF
newsletter delivery, and exclusive IN TOUCH access.
Global Partnership Program
We have initiated relationships with Argentina, Austrailia, Brazil,
Columbia, Germany,
Mexico, and Japan through
our Global Partnership
Program. In our Global Partner section, you will find patient
support organizations and education from around the globe.
DNA Diagnosis for Porphyrias Now Available
Read how you can
get involved with the Mount Sinai Porphyria
DNA Testing Laboratory or view all US
laboratories and specialists.
Stay IN TOUCH
The APF created a valuable program through which
Sponsors can be educated and stay In Touch. Through In
Touch Meetings hosted by Sponsors across the country,
you can meet friends who share your experiences with porphyria,
view the latest educational materials,
and usually meet an expert over
the phone.
Advisory Board
Our Advisory
Board is made up of the world's foremost experts in
porphyria management, diagnosis, and research. They
have written or approved the medical information on this
website.
 Disease
Management Document
This document includes essential information about
porphyria, types, testing, and treatment with Panhematin®.
If you have a question, please email porphyrus@aol.com or call the APF office 1-866-APF-3635. |
| Updates and Additions |
| Drug
safety database—Search for safe and unsafe
drugs for patients with porphyria. (2/1/2007) |
| APF
Newsletter—The 3rd Quarter 2008 APF Newsletter is
now available online. (10/15/08) |
| Newly
Posted Member Story—Read another courageous
story in our Member Story section. (3/27/08) |
Announcements
Join us at an upcoming In Touch Meeting
Writers Group Donates $5.00 per book sales to APF
Updated CME
Recommendations for the Diagnosis and Treatment of the Acute Porphyrias is now available
Porphyria Medical Centers
Finding a Specialist and/or the Right Doctor
Learn tips for better Doctor-Patient Communication.
Need support and friendship? Attend or host an APF In Touch meeting in your area.
Fundraise in Your Own Back Yard
Learn about fundraising
opportunities here.
We are here for you.
If you have questions about porphyria, available resources, reimbursment issues, our In Touch program, or porphyria specialists, call the APF Toll Free at 1-866-APF-3635.
 Read
about Desiree Lyon Howe's inspirational book, Porphyria,
A Lyon's Share of Trouble, at porphyriabook.com.
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