Global Genes invites you to join us for the 8th and final session of our year-long virtual patient summit. Knowing The Rights for your RARE Child, (Or Yourself) 📅 Thursday, October 16th | 🕑 12:30 – 2:00 p.m. ET Understanding your legal rights is critical to effectively advocate for your child and yourself. Join us for […]
It was an unforgettable weekend at the Baltimore Running Festival! Team CdLS Baltimore didn’t just cross finish lines; they surpassed their fundraising goal, raising over $16,700 for families affected by CdLS. Thank you to everyone who ran, cheered, and volunteered. Congratulations to the Team on your incredible accomplishment! You committed months ago, trained through it […]
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 […]