Medical Advocacy

CDKL5 Medical Advocacy

How to Advocate for Your Child in the Medical System

If you are the parent of a newly diagnosed CDKL5 child, you are just now discovering how much of our lives revolve around therapies and medical appointments. We’ve detailed the symptoms and treatments of CDKL5 extensively in the Clinical Care Guide.

This guide, however, is intended to help you learn to navigate the medical system. Numerous medical specialists will, at various points in your child’s development, become part of your multi-functional medical team — from neurologists, to gastroenterologists, to an array of skill-specific therapists. Here’s what you need to know to partner with them as your child’s best advocate.

This guide teaches you how to:

  • Organize your child’s medical records
  • Build rapport with your medical team
  • Access support services

In addition to this guide, you will receive the IFCR newsletter.

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Medical Advocacy