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 […]

The next CdLS Foundation Parent Support Group is scheduled for March 5, and we’d love to welcome you. 📅March 5, 2026 🕖 7:00–8:15 p.m. ET 📍 Zoom (link provided upon […]

Hosted by Courageous Parent Network (CPN) Feelings of guilt and regret, including the anticipation of those emotions, are natural for all parents. However, they are particularly prevalent for those caring […]

The CdLS Foundation, in partnership with Shriners Children’s Salt Lake City, is pleased to announce a Multi-Specialty Clinic for children with Cornelia de Lange Syndrome (CdLS) on March 11, 2026, […]

The next CdLS Foundation Parent Support Group is scheduled for April 2, and we’d love to welcome you. 📅 April 2, 2026 🕖 7:00–8:15 p.m. ET 📍 Zoom (link provided […]

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, […]

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 […]

Join us at this year’s Denise D’Ascenzo Foundations annual Walk to Fight Rare Diseases. The event will take place at Quinnipiac University, Burt Khan Gym at 10AM. There is plenty […]

The next CdLS Foundation Parent Support Group is scheduled for May 7, and we’d love to welcome you. 📅 May 7, 2026 🕖 7:00–8:15 p.m. ET 📍 Zoom (link provided […]

International CdLS Awareness Day is an opportunity for our community and the world to come together to raise awareness about CdLS, a rare and often misunderstood genetic spectrum disorder. This […]