NCBRS Worldwide Foundation

The NCBRS Worldwide Foundation is a patient advocacy organization dedicated to supporting individuals with Nicolaides-Baraitser Syndrome (NCBRS) and their families. It provides resources, educational materials, and support networks to help families understand and manage the condition. The foundation also promotes research and awareness initiatives to advance understanding of NCBRS. It collaborates with medical professionals, researchers, and other organizations to improve patient care and facilitate research efforts. The foundation's activities include hosting conferences, providing informational resources, supporting patient registries, and engaging in advocacy to influence policy and funding for NCBRS research and support.