Rare Disease Day® takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers […]

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 […]

We are excited to share that there will be a Multi-Specialty Clinic for children with CdLS on March 8, 2023, at Shriners Children’s Salt Lake City. The CdLS Foundation and […]

All relationships face stress, but partners caring for a child with a serious illness are confronted with unique challenges. Each person in the relationship may cope differently. You may feel […]

Grief whether anticipatory or in bereavement is a shared experience for the family and yet each member will likely experience and process grief in different ways, over different periods of […]

Join families from California for a CdLS Foundation Sponsored Family Gathering. Graciously hosted by Traci Weber and Kimberly Ingold Saturday, March 25, 2023 11–3 PM PST Harvard Community Center 14701 […]

This Foundation-managed, free clinic occurs twice yearly at Greater Baltimore Medical Center (GBMC) in Baltimore, MD. Foundation Medical Director Antonie Kline, M.D., Director of Clinical Genetics at the Harvey Institute […]

So much of our ability to access medical and behavioral health care in the U.S. depends on a family's health insurance. Whether your health coverage is offered by your employer, […]

Anyone, from infancy through adulthood, can experience medical trauma. Caregivers can too. Understanding what medical trauma is and knowing the signs can help you get support for your child and […]

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 […]