There are often challenges when you have a family member with a rare diagnosis like CdLS. All the puzzle pieces that make up your loved one’s care can seem so disjointed. Information can be hard to get, hard to understand, and even harder to keep organized and easy to find just when you need it most. It can feel like you are constantly recreating the wheel whenever your family member has a new provider. So you are comfortable that they understand the most important things about your family member.

The CdLS Health Care Notebook provides an easy way to keep track of and share important information with your care team.

This webinar is part of two-part series. In this webinar, you will learn how to use the CdLS Health Care Notebook as an essential tool in coordinating and managing the needs of your family member with CdLS.

The second webinar will provide information on Navigating the Health Care System and how to become a stronger advocate with providers and your Health Plan. We hope you will join us for these webinars.