Skip to main content

Porphyria Post

Hurricane Florence
https://imgssl.constantcontact.com/letters/images/sys/S.gif
https://imgssl.constantcontact.com/letters/images/sys/S.gif
https://imgssl.constantcontact.com/letters/images/sys/S.gif
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!
https://imgssl.constantcontact.com/letters/images/sys/S.gif
https://imgssl.constantcontact.com/letters/images/sys/S.gif
https://imgssl.constantcontact.com/letters/images/sys/S.gif
Do you have AIP, VP or HCP? Are you interested in participating in research? If so, we are recruiting volunteers for the Panhematin Study.
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
https://imgssl.constantcontact.com/letters/images/sys/S.gif
https://imgssl.constantcontact.com/letters/images/sys/S.gif
https://imgssl.constantcontact.com/letters/images/sys/S.gif
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 Hepatitis C.

Who can participate?
  • Adult 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
https://imgssl.constantcontact.com/letters/images/sys/S.gif
https://imgssl.constantcontact.com/letters/images/sys/S.gif
https://imgssl.constantcontact.com/letters/images/sys/S.gif
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 porphyrus@porphyriafoundation.org
"Remember...Research is the key to YOUR cure!"
Each Step Toward Finding an Effective Treatment is Important!

Patient Education and Support Meetings
Mark your calendars!
Saturday, September 29 | Cincinnati Children’s Hospital | 3333 Burnett Ave. |  Room S1.204 | Cincinnati, OH 45229 | 11:00 AM – 2:00 PM
Sunday, November 11 | UCSF Medical Center | 505 Parnassus Ave.| Room: S-157| San Francisco, CA 94143 | 5:30 PM -7:00 PM |
Contact Edrin at the APF office at 1.866.APF.3635 or by email at edrinw@porphyriafoundation.org to RSVP!

Comments

Popular posts from this blog

Amazing patient advocacy....and needed media for this issue. Thank you Terri Witter!

Q & A WITH PORPHYRIA EXPERT, DR. BRUCE WANG, UCSF

Q & A WITH PORPHYRIA EXPERT, DR. BRUCE WANG, UCSF 
The APF asked our Facebook friends for their top questions they would ask a porphyria expert.
 The following questions were submitted to Dr. Wang for his responses ... Q. Does EPP give us bad teeth? Also, do people with EPP get stomach pains or is that with the other porphyias? A. The porphyrin that accumulates in EPP patients is protoporphyrin IX, which does not cause discoloration to teeth or abdominal pain.
 The type of porphyria that leads to discolored teeth is Congenital Erythropoietic Protoporphyria. The porphyrias that lead to episodic abdominal pain attacks are the acute hepatic porphyrias. Q. I have EPP and I have a severe reaction on my hands and lips. Do I seek urgent care? Also, what can you even do when you burn your lips? A. The acute reactions to sunlight in EPP can be very severe and, unfortunately, there are not many effective options to treat the symptoms. Nonsteroidal anti-inflammatory drugs (NSAIDS such as ibup…