Medical Advocacy Guide

father tickling son, son is sitting on father's lap laughing, son has MECP2 Duplication Syndrome

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Guide Cover - Medical Advocacy

Medical Advocacy Guide

As the parent of a child with MDS, you’re probably quite familiar with this important reality: Not much is known about MECP2 Duplication Syndrome among many members of the medical community. 

This guide is intended to help you partner with your medical team as your child’s best advocate. The information provided here was developed by a team of researchers and parents. While we are based in the United States, we hope some of the information will be helpful to families around the world.

This free download includes:

  • Medical Advocacy Guide
  • Example Letter of Medical Necessity
  • Example Health Record