Several years ago, NFXF Advocates were successful in adding Fragile X research to the Department of Defense's Congressional Directed Medical Research Program (CDMRP) list of authorized research areas. Each year, the NFXF advocates for continuation »
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On March 2-3, 2016 the NFXF held its 13th Annual Advocacy Day in Washington, D.C. It was a resounding success was attended by 150 advocates from 30 states. This included a record number of siblings and self-advocates who have rapidly become some of the most enthusiastic and impactful advocates for Fragile X.
For the third year in a row, we are partnering with Rare Disease Legislative Advocates, a project of the EveryLife Foundation, to schedule Fragile X advocacy meetings with members of Congress and their staff during the August recess. Here is what you need to know.