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Awareness of CdLS

Awareness of CdLS

From kindergarten classrooms to U.S. congressional offices, the CdLS Foundation is committed to educating the public about the syndrome.

An estimated 20,000 men, women and children have CdLS but remain undiagnosed and/or without the support services the Foundation provides. In order to raise consciousness of CdLS among the public, the Foundation produces materials specific for awareness. These include bookmarks, fliers, brochures, a public service announcement, electronic presentations, and more. The Foundation also provides materials specific to students and medical professionals.

In 2006, staff and members of the Foundation’s board of directors traveled to Washington, D.C., to visit dozens of congressional offices and educate the country’s leaders about the syndrome. That work continues today, as we advocate for federal awareness and support.

If you are interested in raising awareness in your community, view our Raising Awareness Web page for ideas and inspiration. You can also volunteer to become an Awareness Coordinator by emailing