• Continuing the Legacy of Your Loved One

    United States families are warmly invited to join us for an English-language gathering focused on connection, reflection, and emotional support at 6:00 p.m. (Eastern Time, U.S.). Register here for the […]

  • Rare Disease Day

    RARE Is Not Rare One out of every 10 Americans is living with a rare disease. Worldwide, there are more than 300 million people with rare diseases. Too often, these […]

  • International Siblings Day

    International Siblings Day is a special time to celebrate the unique, lifelong bond between brothers and sisters. Siblings of individuals with CdLS play an incredible role, offering love, support, advocacy, […]

  • Adolescent and Adult Multidisciplinary Clinic

    Harvey Institute for Human Genetics, Greater Baltimore Medical Center 6701 N. Charles St., Suite 2326, Baltimore, MD, United States

    This Foundation-managed, free Cornelia de Lange Syndrome (CdLS) clinic is held twice each year at Greater Baltimore Medical Center (GBMC) in Baltimore, Maryland. Led since 2001 by Foundation Medical Director […]