Tuesday, October 30, 2018

Porphyria POST

VOTE: 2019 Pet Calendar, RSVP - Patient Education Meetings and EPP Clinical Trials

Let the voting begin!
Submissions have now closed for the 2019 Pet Calendar Contest. We appreciate all of your entries and can't wait to see how well everyone does in the contest.
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!

New Publication - Journal of Pediatrics
Dr. Manisha Balwani, Porphyria Expert at Mount Sinai in New York City recently authored a publication that was recently released in the Journal of Pediatrics.
Please click on the link below to review.
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 - Missouri
LOCATION
THIS MEETING HAS BEEN CANCELLED
DATE AND TIME
10/27/18 12:00pm - 10/27/18 2:00pm
This meeting has been cancelled and will be rescheduled at a later date. If you have any questions, please reach out to Edrin at the APF!

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!

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