Losing a loved one with CdLS at any age is life-altering. Parents, siblings, grandparents, relatives, and friends experience profound grief, often accompanied by questions that have no easy answers. During these moments, the support of a compassionate community can make all the difference. Though their child, sibling, or loved one may no longer be physically […]
International and United States Gathering (English Speaking) – Continuing Your Child’s Legacy After the main Remembrance Day event, international and United States families are warmly invited to stay with us for a special English-language gathering focused on connection, reflection, and emotional support at 12:00 p.m. (Eastern Time, U.S.). Register Here for the 12 p.m. event. […]
El 12 de febrero de 2026, nuestra comunidad CdLS de todo el mundo se reunirá para un encuentro muy especial: el Día Internacional de Recuerdo CdLS. Este será un espacio creado con amor para honrar a nuestros hijos y seres queridos, recordar sus vidas y acompañarnos unos a otros con compasión y cariño. Recordar no […]
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 6 p.m. event This space will be led by: Amy Graver, Bereaved Champion at Courageous Parents Network. Amy Graver currently works in the corporate world […]
Hosted by Parenting Special Needs Magazine Ask the Special Education Boss®: Live IEP Q&A with Karen Mayer Cunningham LIVE ONLINE EVENT Join Parenting Special Needs Magazine for a free live Q&A webinar with nationally recognized special education advocate Karen Mayer Cunningham, known as The Special Education Boss®. This interactive session is designed to help parents, […]
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 […]