Wednesday, November 21, 2018

Porphyria Post

Porphyria Post

Happy Thanksgiving!

APF Office Closure
We would like to wish you all a very Happy Thanksgiving! For those of you traveling this Holiday, please have a safe and fun trip.

The American Porphyria Foundation will be closed on Thursday, November 22, 2018 and reopen for normal business hours on Monday, November 26, 2018. Please see below for some additional announcements from the APF.

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.
Clinical Trial for EPP - We NEED you!
The Mitsubishi Clinical Trial is in danger of being cancelled if we do not fully enroll with 102 participants. We must have full participation in order to push this new drug toward approval. We know that a Phase 3 trial is very unlikely if our small EPP community does not come together to fill this trial. Adults who participate will pave the way for a near-future pediatric trial.

Here are the facts. We need 102 total participants for this clinical trial. There are 500+ known patients with EPP in the US, including children and older adults. 1 in 4 patients meet the age requirement. Of those approximately 400 patients, another subset cannot participate due to medical exclusions (other needed medications, high liver enzymes, history of melanoma, etc.) To date, the drug has proven non-toxic and there have been essentially no dropouts in this study to date. The promise of a new treatment depends on you.
Call the APF on 866-APF-3635 or 301-347-7166.

We will connect you with a Research Coordinator that will answer all your Questions and concerns. We will work to make this process as easy as possible for you. It is 5 months of your life in order to give a future to ALL with EPP! To date there is no public information on the future of Scenesse. If we are able to get two FDA-approved treatments on the market, it may lower costs. If we do not do all we can as a community, we will have no treatment of EPP.

Bottom line: We need YOU! Please dig deep and consider being part of this changing moment for all with EPP.
Pet Calendar Update!
Thank you all for submitting your pets for the 2019 Pet Calendar Contest.

We have had an overwhelming response of submissions from our community. Please note that we are working diligently to have this calendar ready for you to purchase soon. Stay tuned for more details!

RSVP Today!

Patient Education and Support Meeting

Double Tree Hotel - San Diego - Hotel Circle
12/01/18 6:00pm - 12/01/18 8:00pm
1515 Hotel Circle South | San Diego, CA 92108 | Room:Cortez | Family and Friends are welcome to attend. We look forward to seeing you there.

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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