Honoring Our Love: Navigating Grief During the Holidays Support Group
Honoring Our Love: Navigating Grief During the Holidays A Supportive Gathering for Parents Who Have Lost a Child with CdLS The holiday season is often described as a time of […]
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Parent University: Parent Panel – Let’s Share Experiences and Learn From Each Other. Search for Peace of Mind and How is it Best Created? – The Path to Peace of Mind
We all have differing experiences as we think about the future. The best way to learn is from others. Le’t hear some great ideas and pitfalls to avoid. Share the […]
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CdLS Foundation November Virtual Support Group 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. The November Support Group topic will be […]
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Stay Covered: Open Enrollment Essentials for Rare Disease Families
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 […]
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Giving Tuesday
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 […]
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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 […]
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Parent University: Checkpoints to Peace of Mind- The Review of Our Journey and Next Steps to Getting There
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 […]
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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 […]
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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 […]
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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 […]