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Porphyria Post


Porphyria Post



Last Day to Vote!

Tomorrow is the last day to capture votes for your furry friends! We look forward to sharing the results with our community.

If you haven't already done so, please go to the APF website to see everyone's submissions!

Make sure that you see your share this link and your individual voting pages with your family and friends.

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.


Here’s how it works:





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 23rd - 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.

Important Dates:

·    Voting: October 23-November 8
·    Calendars ready for sale and shipping on November 25th!


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!



EPP Clinical Trials - NEED PARTICIPANTS
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!

Pharmaceutical company: Mitsubishi Tanabe
Length on treatment: 16 weeks
Treatment: Oral (pills)
Number of appointments: 7-9 
Arrangements: Includes Travel/hotel/food
Stipend: Each participant will receive a stipend
Locations: New York City, NY/Winston-Salem, NC/Miami, FL/Galveston, TX/Salt Lake City, UT/San Francisco, CA 
How many participants do we need: 102!!!

Please contact the APF at 1.866.APF.3635 if you are interested in participating.

"Remember...Research is the key to YOUR cure!"
Each Step Toward Finding an Effective Treatment is Important!

Website Update!

You are now able to access the new website from any browser and on any device at www.porphyriafoundation.org

Thank you to our members, industry partners, and our brilliant physicians for making this update possible!

RSVP TODAY!
Patient Education and Support Meetings coming your way. Contact the APF today to RSVP! We look forward to seeing you there.

Patient Education and Support Meeting - San Francisco

LOCATION
UCSF Medical Center | 505 Parnassus Ave.| Room: S-157| San Francisco, CA 94143
DATE AND TIME
11/11/18 5:30pm - 11/11/18 7:00pm
Seating is limited. Please RSVP Today!!



Patient Education and Support Meeting - San Diego

LOCATION
Double Tree Hotel - San Diego - Hotel Circle | 1515 Hotel Circle South | San Diego, CA 92108 |
DATE AND TIME
11/11/18 5:30pm - 11/11/18 7:00pm
Room: SOLANA | Please RSVP Today! Please note that there will be a Porphyria Specialist on site. We look forward to seeing you there!






Get Involved




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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