Time: Registration begins at 9:30; walk begins at 10. - No advance registration required. - 2-mile walk on Stony's paved path at your own pace. We'll have coffee, donuts, bagels and juice. - Even if you can't walk, it's a wonderful opportunity to connect with other families impacted by CdLS. Last year, we had 4 […]

Join families from Texas and surrounding states for a CdLS Foundation Family Gathering. Sunday, October 19, 2025 11:00 a.m. - 2:00 p.m. CT Graciously hosted by: Tiffany, mom to Tristan and Olivia, and Bailey, mom to Carson Windhaven Meadows Park 5400 Windhaven Pkwy Plano, TX 75093 Family Gatherings are planned with your whole family in […]

This Foundation-managed, free clinic occurs twice yearly at Greater Baltimore Medical Center (GBMC) in Baltimore, MD. Foundation Medical Director Antonie Kline, M.D., Director of Clinical Genetics at the Harvey Institute for Human Genetics at GBMC, has led these clinics since 2001. Any individual age 12 or older with CdLS can attend with their families. Presentations […]

Join us for the Cornelia de Lange Syndrome Foundation's 11th Scientific Symposium Toward Therapy for Chromatin Disorders: CdLS and Beyond Friday, November 7, 2025 8:30 a.m. - 5:00 p.m. PT Beckman Center of the National Academies of Science & Engineering 100 Academy Way Irvine, CA 92617 We will explore some of the most exciting frontiers […]

Join families from California for a CdLS Foundation-sponsored Family Gathering. Saturday, November 8, 2025 11:00 a.m. - 3:00 p.m. P.T. Graciously hosted by: Traci, mother to Jacob Weber Sweet Shade Ability Center 15 Sweet Shade Irvine, CA 92606 Family Gatherings are planned with your whole family in mind. There will be activities for everyone. You'll […]

Join CPN and chaplain and researcher Amanda Borchik, MDiv, BCC to learn about the ways children express their unique spirituality and to discuss ways that we as parents, caregivers and clinicians can nurture their spirit. This event will take place on Monday, November 10th at 8:00 pm ET (7:00 pm CT, 6:00 pm MT, 5:00 […]

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 joy, celebration, and togetherness. But for parents who have experienced the profound loss of a child, these months can also bring waves of grief, longing, […]

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 best things to try, and what you might avoid. This is a HOPE session, and you will learn IT IS possible, but that you are […]

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 resources. Thursday, November 13, 2025 7:00 – 8:15 p.m. ET 📍Topic: Resources We believe no parent should walk this path alone at the CdLS Foundation. […]

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. […]