We know how much you carry every day — appointments, school meetings, medications, behaviors, and the emotional weight of loving someone with CdLS. It’s a lot, and you don’t have to carry it alone 💙 Each month, the CdLS Foundation hosts virtual support groups for parents of children and adults with CdLS. Our next CdLS […]
Hosted by Courageous Parent Network (CPN) Receiving a genetic diagnosis (or lacking a diagnosis) for a child can be a profoundly life-altering experience for families. In this session, Mary-Frances will draw on her extensive experience working with parents and caregivers to explore the complex emotional responses that emerge as families learn to live with a […]
The next CdLS Foundation Parent Support Group is scheduled for February 5, and we’d love to welcome you. 📅 February 5, 2026 🕖 7:00–8:15 p.m. ET 📍 Zoom (link provided upon registration) 💡 Topic: Caregiver Burnout This confidential, parent-only space offers time to: -Share what’s on your heart — or just listen -Learn from other […]
Hosted by Courageous Parent Network (CPN) Genetic testing can play a powerful role in helping families find answers about their child’s health. In this session, we’ll walk you through the different types of genetic tests, what they can (and can’t) tell you, and how they’re used to diagnose a wide range of conditions. We’ll also […]
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 […]