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Take Action to Get Support From Local Legislators to Approve NIH Funding for The Natural History Study Surrounding Rett-Like Syndromes

The first round of scoring is complete for the application for the Natural History Study surrounding Rett-like syndromes.  It is important to note that this application is different from the First Natural History Study in that it concentrates on the Rett-like syndromes, focusing on: Rett Syndrome, atypical Rett syndrome (including both FOXG1 and CDKL5), and MECP2 Duplication syndrome.  The new U54 Grant application for the Natural History Study received an “Excellent” score.  However, an “Excellent” score does not guarantee funding.  Funding will be determined by the scores of the other applications in the cycle and how much money the NIH has to spend on these Natural History Studies.  Your voice will also help in this determination process!

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Ongoing Campaigns

Get Your State Involved

Governors in several states honor our effort by signing proclamations declaring October as Rett Syndrome Awareness Month in their states. These proclamations are available to you and they can be downloaded. Click the link below to send your Governor a letter requesting their support of a proclamation for your state.

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