So much of our ability to access medical and behavioral health care in the U.S. depends on a family's health insurance. Whether your health coverage is offered by your employer, purchased on a health exchange, or includes Medicaid or Medicare, understanding health insurance is a challenge for just about everyone. Making sure you make the best selection possible for your family, understand your benefits, and how to get the most from your health plan is even more important when someone…

Anyone, from infancy through adulthood, can experience medical trauma. Caregivers can too. Understanding what medical trauma is and knowing the signs can help you get support for your child and family. Dr. Meghan Marsac, pediatric psychologist, and pediatric medical trauma expert, and Melissa Hogan, mother of a child with a rare disease, wrote the book “Afraid of the Doctor” to help families who experience stressful and potentially traumatic medical events. Join us in conversation with them to learn more about…

CdLS Awareness Day is observed each year in order to shed light on this often misdiagnosed, little-known genetic syndrome. Parents, volunteers and others request official Awareness Day proclamations from governors and local leaders; hang awareness flyers in public places; make presentations to civic groups or health workers; write to their local newspapers; and much more. For more information contact Gabrielle Nadeau

The CdLS Foundation will once again have a fantastic Team CdLS running in Chicago! The 2023 Bank of America Chicago Marathon has been officially scheduled for October 8. Team CdLS will converge on Chicago this Fall, and to run for our precious children and adults with CdLS and their families. Team CdLS - Chicago is in the process of building our team of runners for the big event. Spots are going fast. Register today. If you are not a runner,…

The CdLS Foundation’s longest running major event - the MCWP & PLM Amber Gaines Memorial Golf Classic – is kicking off its 35th year on Monday, October 9, 2023, at the beautiful Tapawingo National Golf Course in St. Louis, MO. Registration and lunch begin at 11 AM with a 12:30 PM shotgun start, followed by cocktails, dinner, and prizes at 5:30 PM. Don’t miss the best golf event in the Midwest!

Join Team CdLS - Baltimore for a chance to run through the scenic Inner Harbor waterfront area, historic Federal Hill and charming Fells Point; all to raise money for children and adults with Cornelia de Lange Syndrome (CdLS).Team CdLS - Baltimore is in the process of building our team of runners for the big event. Spots are going fast. Register today. If you are not a runner, but want to get involved, contact Sherry Waitsman for ideas.

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 on the following topics from CdLS Clinical Advisory Board members: Behavioral Psychology, Child Psychiatry, Gastroenterology, Genetics, Gynecology, Neurology, Pediatric Ophthalmology, Speech Pathology. Live Q&A with…