As rare disease patients approach adulthood, they face the transition from parent-supervised pediatric care to more independent adult models whereby they take ownership of their care. This change can seem […]

Guardianship is a legal process and used when a person can no longer make or communicate safe or sound decisions about his/her person and/or property. Before establishing a guardianship, you […]

CdLS Awareness Day is observed each year in order to shed light on this often misdiagnosed, little-known genetic syndrome. Parents, volunteers and others request official Awareness Day proclamations from governors […]

You spend so much time and effort creating the Future Life Care Plan for your family member with special needs.  Your estate and financial plans cannot be like everyone else’s.  […]

The SFN Dads Virtual Conference is for dads raising children with special needs, interested in:     - developing their fathering skills - gathering resources for their child and family, and […]

Join the Local Planning Committee for a virtual race benefiting CdLS. Cornelia de Lange Syndrome or CdLS is a rare genetic syndrome that causes a broad range of physical, cognitive, […]

Please join us for a California Virtual Family Gathering. Hosted by the CdLS Foundation Family Service and RCs Karen Prada, Melissa Staggs, Susan Drexler and Dena Davis. Send a photo […]

A very important component of the Future Life Care Plan is the Special Needs Trust.  The careful selection of those who will make sure your goals for the Special Needs […]

Come and Celebrate with us! Join members of the CdLS Foundation Board of Directors and staff as we salute 40 years of supporting our families, while raising money and enjoying […]

Hosted by Charyn Beaumont, Families can stay the whole time or just drop by if they would like. It will be located under the red and white striped tent at […]