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Patient Education Meetings, PCT Study & Longitudinal Study

Patient Education Meetings and more...




Patient Education and Support Meeting
LOCATION:
Cincinnati Children's Hospital | 3333 Burnett Ave. | 2nd Floor, Section D | Cincinnati, OH 45229
DATE AND TIME:
09/29/18 11:00am - 09/29/18 1:00pm

Are you interested in hosting a Patient Education and Support Meeting?
This is a valuable opportunity to bring patients, caregivers and supporters together to share common issues and to learn more about porphyria from an expert. The APF would like to help you coordinate your efforts. Please click on the link below, fill out the form attached and send it back to Edrin Williams via email at edrinw@porphyriafoundation.org or by mail to the APF office and someone will be in touch to map out the details of your meeting. We look forward to hearing from you!

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 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)              
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.
Safe and Unsafe Drug List Questionnaire

Longitudinal Study
Are you interested in participating in research? If so, we need YOU!! Our team of researchers are searching for people to participate in the Longitudinal Study.
The purpose of this long-term follow-up study is to collect a large group of patients with the different types of porphyria and to provide a better understanding of the natural history of these disorders. The hope is that this information will help in developing new forms of treatment.
Contact Edrin Williams, Director of Patient Services at the APF for additional information.
            

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 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…