Wednesday, March 9, 2016

Rare Disease Week Recap

Representatives of the XLH Network were busy in Washington, D.C. during Rare Disease Week.

President Bill Coogan and past president Becky Mock attended events at the NIH and displayed our literature there along with posters reflecting data from Ultragenyx's Burden of Illness study. You can get a taste of the proceedings by by viewing the speeches from the NIH, including comments by members of the U.S. Congress's Rare Disease Caucus and directors of government agencies dealing with medical issues.

Bill and Becky also attended events sponsored by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation, a nonprofit dedicated to accelerating biotch innovation for rare disease treatments through science-driven public policy), and met with legislators to discuss the needs of the rare disease community. We'll have more later on some pending legislation of interest to members of the rare disease community.

You can see pictures from the event at our official Facebook page.

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