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 individuals and families are left isolated and without answers to their medical questions. It doesn't have to be that way. Rare Disease Day is a […]
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 registration) 💡 Topic: Community Integration This confidential, parent-only space offers time to: -Share what’s on your heart — or just listen -Learn from other parents […]
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 for children living with medical complexity. The stakes are high. Parents feel pressure to get it right – from making potentially life-saving medical decisions to […]
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, at Shriners Children’s Salt Lake City. This clinic provides children with CdLS and their families access to comprehensive, coordinated medical care in one convenient location. […]
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 upon registration) 💡 Topic: Bring Your Loved One This confidential, parent-only space offers time to: -Share what’s on your heart — or just listen -Learn […]
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, and friendship in truly unique ways. We invite you to join us in honoring these amazing relationships by sharing photos of you and your sibling […]
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 Antonie Kline, M.D., Director of Clinical Genetics at the Harvey Institute for Human Genetics at GBMC, the clinic provides families with direct access to nationally […]
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 of free parking, pizza truck for all participants, magic show, children’ activities, musical entertainment, and much more. Join the team, have some fun, meet other […]
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 upon registration) 💡 Topic: Future Planning This confidential, parent-only space offers time to: -Share what’s on your heart — or just listen -Learn from other […]
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 meaningful day is about more than awareness; it’s about connection, education, and hope. Families, advocates, healthcare professionals, and supporters unite to share stories, spread knowledge, […]