Navigating Health Care Systems

Ensuring your loved one with CdLS gets the care they need can seem like a full-time job. There are multiple care systems to understand, and it can quickly become confusing. This page is here to help you navigate.


CdLS Health Care Notebook

The CdLS Health Care Notebook is the first of multiple tools from the CdLS Foundation that makes accessing and coordinating care more manageable. It provides an easy way to keep track of important information so you can find it and share it any time you need. You can update the notebook in real-time, with the ease of a smartphone or any electronic device.

Introducing the CdLS Health Care Notebook

Review the CdLS Foundation’s new advocacy tool that encourages better communication between families and the medical community, school systems, and social environments. This new feature will help you stay organized and help relieve some of the burdens of educating others about CdLS.

Presenter: Linda Pierce, M.S.W., Program Director, Family Service

PowerPoint presentation.

Request A Publication

We also have many publications about CdLS you can keep, share, and include in your Health Care Notebook. We can email or mail any publications listed. Please note, we can only mail hard copies to the United States.