• Virtual Support Groups for Parents

    The CdLS Foundation is pleased to offer Virtual Support Groups for Parents, providing a consistent opportunity to connect, share, and support one another. 🗓 Thursday, December 4, 2025 🕖 7:00 – 8:15 p.m. ET We believe no parent should walk this path alone at the CdLS Foundation. As caregivers, you are the backbone of our […]

  • CdLS Foundation January Virtual Support Group for Parents

    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 […]

  • In the Room: Navigating the Space Between Adjustment and Acceptance in the Context of a Genetic Diagnosis

    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 […]

  • CdLS Foundation February Virtual Support Group for Parents

    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 […]

  • In the Room: Unlocking Answers: What Every Parent Should Know About Genetic Testing

    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 […]

  • International CdLS Remembrance Day

    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 […]

  • 2026 International CdLS Remembrance Day: Continuing Your Child’s Legacy

    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. […]

  • Día Internacional de Conmemoración del Síndrome de Cornelia de Lange

    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 […]

  • 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 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 […]