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10/18/18 Porphyria Post

PLEASE READ IMPORTANT!
October 18, 2018

Porphyria Post
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.

WE NEED YOU FOR THE EPP CLINICAL TRIAL!
IF NOT YOU, THEN WHO??
1. Do you have a diagnosis of EPP?
2. Are you interested in participating in research?
If so, we NEED you!
Participants are desperately needed for participation in a Phase II clinical trial to study an investigational drug for EPP. CONTACT THE APF ON 1-866-APF-3635 or email porphyrus@porphyriafoundation.com to learn more.
An oral investigational drug has been developed with the potential to increase sunlight duration and tolerance in individuals with EPP. This phase II clinical trial is needed to understand if the investigational drug works and to ensure that it is safe. The study duration is 24 weeks including follow-up. You must be age 18-70 to participate and have a confirmed diagnosis of EPP. All travel is included and will be arranged by a concierge service.
• We need patients at all participating sites (NYC, Wake Forest, Miami, Utah and UCSF)
• Please note that the site at the University of Utah have just opened for enrollment.
• The site at the University of California San Francisco will be enrolling patients soon.
Contact the APF today! 1-866-APF-3635.
"Remember...Research is the key to YOUR cure!"
Each Step Toward Finding an Effective Treatment is Important!

Pet Calendar Update!
Thank you all for submitting your pets for the 2019 Pet Calendar Contest. Submissions are due by Sunday, October 21, 2018. See the instructions below on how you can get involved.
We have had an overwhelming response of submissions from our community. Please note that we are working diligently to upload your pet photos to the APF Website. Please be on the lookout for updates from the APF team regarding your profile.

CALLING ALL PETS!!!
Welcome to the 2019 APF Pet Calendar Contest – YOUR pet can win a coveted spot on this fun and informational calendar! The final 12-month wall calendar will feature your wonderful animals, porphyria facts, tips, and important dates. Voting for the top slots will be held online and will benefit our critical Protect the Future program. Enter your pets – then a link will be created to encourage voting! Pets are an important part of our lives and provide much-needed unconditional love in tough times. We look forward to showing off your special friends as your photos roll in!!
Here’s how it works:
To Enter (free!):
• Email a picture of your pet(s) to the APF by October 21st.
• Send to autumnlee@porphyriafoundation.org with the subject heading “APF Pet Calendar”. Make sure to include:
• Pet type and name
• Owner name, email, and mailing address**
• Send a caption, too! (optional)
To Vote:
• ALL photo entries will be included somewhere in the calendar, though the “top dogs” will be featured on the cover and in each month!
• Starting October 17th - Your pet’s photo will be posted on the APF website for all to see. You’ll be able to share the link with family and friends to encourage a vote! Anyone can participate with a $1+ donation per vote.
Rules:
• You may enter one photo that contains as many of your pets you wish to include. Remember that this photo will be voted on so choose your best!
• Anyone can enter
• No professional or copyrighted photos
• Any type of pet can be submitted; past and present
• No humans please
• Photos cannot be photo shopped or professionally edited
Important Dates:
• Submissions due by October 21st
• Voting: October 23-November 8
• Calendars ready for sale and shipping on November 25th!
Thank you to Nicole Castellano for leading this effort for the APF!
Please contact Autumnlee at the APF office with any questions at: autumnlee@porphyriafoundation.org or call (301) 347-7166.
GOOD LUCK TO EVERYONE and HAVE FUN!
Get Involved
• Research •
 Donate 
• Visit our Website •
Contact Information
Is your contact information up to date?
If not please give us a call @ 866-APF-3635 or Email to porphyrus@porphyriafoundation.com
American Porphyria Foundation| 1.866.APF.3635 | porphyriafoundation.org
STAY CONNECTED

"Remember....Research is the Key to Your Cure!"


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