Wednesday, November 29, 2017

Patient advocacy around the world

The weekend of November 4th, patient advocates for the XLH community gathered in Frankfurt, Germany. Two board members, Oliver Gardiner and Elizabeth Olear spoke at the meeting, sharing their personal experiences and those of the Network.

Elizabeth and Oliver interacted with representatives from France, Belgium, Spain and Denmark, along with employees of Ultragenyx and Kyowa Kirin International (the company bringing KRN23/burosumab to market in Europe). A consultant helped guide the interactions, and we hope to see the conversations come to fruition with some great collaborative projects in 2018.

You can see pictures from the event at our official facebook page here:

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