Thursday, September 4, 2014

Important Update About a Patient Education Meeting in Boston

Important Update About a Patient Education Meeting in Boston
As you know, American Association for the Study of Liver Diseases (AASLD) will host their annual meeting in Boston Nov 7-11, 2014 at the Hynes Convention Center. We invite you to participate in a patient education meeting. The meeting will be held at the Carrie Hall at the Brigham and Women's Hospital on November 9 from 3 to 6 pm.
This meeting provides an excellent opportunity for you to speak to the experts and to meet fellow-patients. Please let us know if you would like to participate.
We also are looking for volunteers to help man the booth.  You will be meeting with the physician attendees, handing out educational literature, and sharing your porphyria experience with the doctors who come to the APF exhibit booth. If you live in the Boston area and are willing to assist us by manning the exhibit booth, please contact the APF: 713.857.0995 or email us at

Rare Disease Briefing in Washington DC
Rare Disease Legislative Advocates in coordination with Rare Disease Congressional Caucus Co-Chairs Representatives Leonard Lance and Joe Crowley, will host a briefing on Implementation of the Rare Disease Provisions in the Food & Drug Administration Safety and Innovation Act of 2012 (FDASIA) PL 112-144.
Wednesday, September 17, 2014
12:00 noon - 1:30 pm
Rayburn House Office Building, Room: B-318
Lunch Provided by event sponsors Amicus & Shire
If you would like to attend and represent the APF, please get registered:

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

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Alie Campbell VP

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