This blog is dedicated to all the Porphyria patients worldwide.
The American Porphyria Foundation will provide updates and information here, as well as on the main site - http://porphyriafoundation.org
Wednesday, September 12, 2018
Hurricane Florence is projected to be a strong Category
4 storm by the time it hits landfall sometime Thursday evening.
In preparation for the hurricane, please make sure that
you are stocked up on non- perishable food items and bottled water.
To our members and doctors in the projected path, please
stay safe and follow emergency management personnel orders.
Panhematin Study - Participants Needed!
Do you have AIP, VP or HCP? Are you interested in
participating in research? If so, we are recruiting volunteers for the
Our researchers need people to volunteer for the
Panhematin study. Completing this study will help prevent insurance companies
from not paying for this treatment.
The purpose of this study is to determine if Panhematin
is safe and effective for prevention of acute attacks of porphyria.
Please contact Edrin at the APF office (301.347.7166) if
you are interested in participating.
Harvoni Study - PCT
Do you have PCT? Are you interested in
participating in research? Do you have Hepatitis C? If you
answered YES to these questions, this is for you.
We need YOU for a clinical trial!
The purpose of this clinical trial is to assess whether
Harvoni alone is an effective therapy in active PCT patients with Chronic
Who can participate?
patients with PCT who also have Hepatitis C
If you are interested in participating please contact
Edrin Williams, Director of Patient Services at the APF office at
301.347.7166 for additional information.
Safe/Unsafe Drug Questionnaire for the Acute
Porphyrias (AIP,VP,HCP & ADP - VERY IMPORTANT
The APF is collaborating with researchers to identify
new safe and unsafe drugs. We need your help. Are you experiencing adverse
effects with any of your new medications? If so, please let us know in the
questionnaire below how it affected you. We will share these results with
our team of renowned Porphyria experts/researchers. They are in the process
of updating our safe and unsafe drug list for the acute porphyrias. Your
donations will help us educate physicians about the dangerous effects of
unsafe drugs. Please click on the link below for the Questionnaire.
Are you ready to be a medical hero? A new clinical
trial with an oral investigational drug intended to reduce phototoxicity
in people living with EPP has begun. Don’t delay – contact the APF to
learn more at 1-866-APF-3635 or firstname.lastname@example.org
"Remember...Research is the key to YOUR
Each Step Toward Finding an Effective Treatment is