Patient Education Meetings

INTERESTED IN HOSTING A PATIENT EDUCATION AND SUPPORT MEETING?

Do you have questions about your rare disease? Would you like to connect with others who are also managing your condition? Hosting or attending a Patient Education and Support Meeting is a wonderful opportunity to get educated and to meet others in your community. All you need to do is find a location, the APF will send invitations and manage RSVPs, secure a Porphyria expert, offer an agenda and send educational materials. Earlier this month, the APF hosted a meeting in Anaheim, CA and this past weekend a meeting was held in Bethesda, MD. We would like to host a future meeting near YOU!

The meeting in California was at a local hotel and had over twenty-five attendees representing various types of Porphyria.  Dr. Anderson, Porphyria expert from University of Texas Medical Branch,  was on hand via Skype to present on Porphyria and answer questions.  Twelve people in Bethesda gathered in the home of Kristen Wheeden. They had the opportunity to learn from Dr. Bruce Wang, Porphyria expert from the University of California San Francisco and from each other. Dr. Wang did a GREAT interactive explanation of Porphyria using lego blocks! A meeting can be held anywhere that can hold a group of people - a home, a church or a conference room.

Please contact Edrin Williams at the APF office on 866-APF-3635 or edrinw@porphyriafoundation.org to host a meeting near you.

 

PATIENT EDUCATION AND SUPPORT MEETING - ATLANTA

The American Porphyria Foundation will be hosting a patient education meeting in Atlanta, GA in conjunction with the 59th Annual ASH Convention. Come meet old and new friends who share your experiences with Porphyria. Please RSVP to Edrin Williams in the APF office at 1.866.APF.3635 or edrinw@porphyriafoundation.org. We look forward to seeing you! Please see the invite below.

 

"Remember....Research is the key to your cure!"

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