Rare Disease Day® takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. For more information, contact Gabrielle Nadeau.

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…

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

Researchers and scientists around the nation are working to change the future of CdLS. The Foundation is the hub that brings them all together. A unique way that researchers get to share their findings with each other and clinicians is the biennial Scientific and Educational Symposium, sponsored by the CdLS Foundation. Symposium brings together new and seasoned researchers to present and publish current and new information related to CdLS and broaden their collective knowledge. This prestigious 2-day event precedes the…

Join us for the Cornelia de Lange Syndrome (CdLS) Foundation National Family Conference, from June 23 to June 26, 2022, in Tulsa, OK. Attendees will have the chance to gain knowledge on how to best care for their loved one and meet other families facing similar challenges. Individuals with CdLS receive free head-to-toe consultations with experts from a range of health and educational fields. Not only will attendees be better equipped to face challenges throughout their loved ones’ lives, but…