Wednesday, May 25, 2016

Ultragenyx Patient Day 2016

Ultragenyx Pharmaceutical sponsored its annual Patient Day in Novato, California this past weekend for patients with the rare medical conditions that the company is working on treatments for, including XLH. It was a chance for patients and their families to hang out and enjoy the entertainment with people in similar medical circumstances.

Network President Bill Coogan, immediate Past President Becky Mock, and Board members Chris Younger and Kathy Buchanan were all there to mingle with approximately thirty members of the XLH community. They reported that the event was a huge success, topped off with a musical appearance by Michael Franti who had everyone on their feet and dancing.

Bill Coogan reports that there was a solid turn-out of both patients with rare disorders and Ultragenyx personnel. Dr. Kakkis (CEO and President of Ultragenyx) and the mayor of Novato were also both present. Bill enjoyed chatting with the XLHers there, reconnecting with some, and meeting others for the first time.

Pictures are over at the official facebook page:

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