Health Insurance is changing …are you ready? Join NORD on November 19 at 2:00PM EST for a webinar to help members of the rare disease community understand what to look for during open enrollment. We will provide tips for choosing the right health plan so you can keep getting the care and medicines you need. […]
Use GivingTuesday to Support the CdLS Foundation! Mark your calendars for December 2. It is the annual celebration of GivingTuesday, a global movement that inspires people to give, collaborate, and make a difference. This special day is all about turning generosity into action, and it’s the perfect opportunity to support the CdLS Foundation. Whether you […]
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 […]
How did we do? We will review the different peace of mind points, evaluate our successes and failures and set some goals for next year. HOPE is important on the journey to PEACE OF MIND! Let’s recognize our successes and pat ourselves on the back for them. Let’s identify our areas to concentrate on so […]
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. […]