Multi-Specialty Clinic for children with CdLS will be held on March 12, 2025, at Shriners Children's Salt Lake City. The CdLS Foundation and Shriners Children's Salt Lake City have a long-standing partnership. We are truly grateful to work together. The clinic is a wonderful opportunity to meet with multiple doctors with expertise in CdLS all […]
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 a new, fun event to raise awareness and funds for our CdLS community. The Eckerd College Science Outreach Club has recently established a Students for Rare chapter affiliated with the National Organization for Rare Disorders. Their mission is to raise awareness about rare diseases and advocate for equitable access to healthcare for individuals within the […]
Join a panel of siblings to gain insights into the fears and worries that siblings carry, the things that helped them (and those that didn’t), and how loving a brother or sister with medical complexity shapes them. This session will be moderated by Dr. Wendy Plante, who for over twenty years has worked with siblings […]
Exciting news! The New England Golf Classic is going virtual!! Join us for an interactive, new way to continue raising awareness and funds and keeping the tradition going. You can play on any course, with anyone, at any time between May 10 and August 31, 2025, and compete with others across the country. You will have […]
International CdLS Awareness Day is observed each year to increase understanding and bring attention to Cornelia de Lange Syndrome (CdLS), an often misdiagnosed and little-known genetic condition. This special day serves as an opportunity for families, advocates, and healthcare professionals to unite in raising awareness and promoting early diagnosis, research, and support for individuals affected […]
This event will help families understand the numerous stages to be considered while developing a special needs master plan for their loved one experiencing a disability. Presented by Mary McDirmid with All Needs Planning; top considerations they hear and help their clients with include: government benefits funding their lifetime tax efficiency insurance housing employment trusts […]
You scream! I scream! We all scream for ice cream! Meet with friends, enter to win an ice cream party, and learn more about CdLS while supporting Team CdLS in the Bank of America Chicago Marathon this fall. Colin MT Hamilton, Treasurer of the Massaco Chapter of the National Honors Society, an academic merit organization […]
“Rolling for Paige” is a special fundraiser dedicated to raising awareness about Cornelia de Lange Syndrome (CdLS), a rare genetic disorder. Paige, the inspiration behind this event, was diagnosed with CdLS after undergoing open-heart surgery at just 5 months old. Over her 18 years, she has had more than 15 surgeries and continues to navigate […]
Join families from New York and the Northeast for a CDLS Foundation-sponsored Family Gathering. Saturday, July 12, 2025 2 – 6 p.m. ET The Arp Home 9B Sandpiper Lane Rexford, NY (9B is on the white mailbox with a long driveway) Graciously Hosted by Jennifer and Nicholas Arp, parents to Jenna. Bring […]
