This Foundation-managed, free Cornelia de Lange Syndrome (CdLS) clinic is held twice each year at Greater Baltimore Medical Center (GBMC) in Baltimore, Maryland. Led since 2001 by Foundation Medical Director Antonie Kline, M.D., Director of Clinical Genetics at the Harvey Institute for Human Genetics at GBMC, the clinic provides families with direct access to nationally […]
Join us at this year’s Denise D’Ascenzo Foundations annual Walk to Fight Rare Diseases. The event will take place at Quinnipiac University, Burt Khan Gym at 10AM. There is plenty of free parking, pizza truck for all participants, magic show, children’ activities, musical entertainment, and much more. Join the team, have some fun, meet other […]
The next CdLS Foundation Parent Support Group is scheduled for May 7, and we’d love to welcome you. 📅 May 7, 2026 🕖 7:00–8:15 p.m. ET 📍 Zoom (link provided upon registration) 💡 Topic: Future Planning This confidential, parent-only space offers time to: -Share what’s on your heart — or just listen -Learn from other […]
International CdLS Awareness Day is an opportunity for our community and the world to come together to raise awareness about CdLS, a rare and often misunderstood genetic spectrum disorder. This meaningful day is about more than awareness; it’s about connection, education, and hope. Families, advocates, healthcare professionals, and supporters unite to share stories, spread knowledge, […]
Join families from Missouri and surrounding states for a CdLS Foundation-sponsored Family Gathering. Graciously hosted by the Sprehe Family, parents of Izaak. Saturday, May 9, 2026 11 a.m. - 3 p.m. CT Millennium Park 2 Barnes W Drive Creve Coeur, MO 63141 Celebrate International CdLS Awareness Day with us! Bring the whole family and join […]
May Parent University™ Class Presented by Protected Tomorrows Class Five Vacations and Respite Ideas for the Whole Family May 14, 2026 12:00 – 1:00 p.m. CST In this exciting session about respite, Protected Tomorrows will cover: • Have you ever thought t is just not possible to have a vacation? • Or maybe just some […]
Hosted by Courageous Parent Network Social media has transformed how families navigate complex medical journeys, creating unprecedented opportunities for connection, information sharing, and support. For parents of children with medical complexity and rare conditions, online platforms can offer vital lifelines to communities who understand their unique challenges. Yet these same spaces also present risks that […]
Join families from Texas for a CdLS Foundation-sponsored Family Gathering. Graciously hosted by the Hendricks and Woods/Jacob families. Saturday, May 30, 2026 10:30 a.m. - 1:30 p.m. C.T. Victory Forest Community Center 3427 Hemphill Street Fort Worth, TX 76110 Family Gatherings are planned with your whole family in mind. CdLS Foundation staff and Clinical Advisory […]
The next CdLS Foundation Parent Support Group is scheduled for June 4, and we’d love to welcome you. 📅 June 4, 2026 🕖 7:00–8:15 p.m. ET 📍 Zoom (link provided upon registration) 💡 Topic: Behavior This confidential, parent-only space offers time to: -Share what’s on your heart — or just listen -Learn from other parents […]
June Parent University™ Class Presented by Protected Tomorrows Class Five ABLE Accounts: The Basics and What to Use When June 11, 2026 12:00 – 1:00 p.m. CST In this exciting session about Able Accounts, Protected Tomorrows will cover: The basics of ABLE, how ABLE differs by state, and how to stay out of trouble. What […]