Wednesday, August 1, 2018

Porphyria Post

Porphyria Post
Panhematin Study
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.
EPP on Fox News - Thursday, August 2nd at 10pm!
Camp Sundown 2018 was extra special for our porphyria community - the first week was dedicated to children with EPP. Fox News caught wind of this special event and came to see what camp and living with photosensitivity is all about.  Tune in tomorrow night - August 2nd - at 10pm to see the segment. The APF will have access after it airs and we will be sure to share with all of you.
Hearing Hoofbeats, Thinking Zebras
Click on the link below to view a story by our patient member Eryn Sallee. Thank you, Eryn, for sharing your story!

EPP Clinical Trials – Participants Needed!
Please contact the APF on 866-APF-3635 to request information on these new clinical trials. There are seven study sites across the US that need your participation. Do you want a new treatment for EPP? – then come be part of the solution.  

Remember…Research is the Key to Your Cure!! Every step along the way is important.
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.

Get Involved
Contact Information

Is your contact information up to date?
If not please give us a call @ 866-APF-3635 or Email to
American Porphyria Foundation| 1.866.APF.3635 |
"Remember....Research is the Key to Your Cure!"

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Judy Snyder Personal Story of AIP

JUDY SNYDER TYPE OF PORPHYRIA Acute Intermittent Porphyria (AIP) It was early April 1997, and I was truly enjoying my job as the...