Additional Family Resources
In a move that takes its commitment to the Hispanic community to the next level, the CdLS Foundation is proud to announce new language articles about Cornelia de Lange Syndrome. Articles range from basic knowledge about CdLS to specialized articles on aging, ENT care, behavioral challenges, and our new Treatment Guidelines.
The medical cards will help aide professionals in diagnosis and treatment of medical issues related to CdLS. Each specialty card not only highlights the professional’s specific field, but also includes general statements about CdLS and common medical issues that are important for all professionals to be aware of and understand.
Our Family Map lets families connect and see that they are not alone.
The CdLS Foundation has established a CdLS Registry at the Coordination of Rare Diseases at Sanford (CoRDS). Patient registries are designed to collect, store and curate data on individuals to be used for a specified purpose. They can be tools to establish natural history studies, establish prevalence, and connect patients with researchers who study their conditions
The CoRDS registry specifically houses basic contact and clinical information on any individual who chooses to enroll and who has been diagnosed with a rare condition.
CdLS Discussion Board
An international forum for parents/direct caregivers and immediate family members of a person with CdLS to support one another and share information and advice.
Brief #1, the first in a series of briefs based on information in the National Center on Deaf-Blindness/Accessible Teaching, Learning, and Assessment Systems (NCDB/ATLAS) report “Students with Significant Cognitive Disabilities and Dual Sensory Loss,” has been released.
Don’t miss this inspiring story of a young woman who became deaf-blind as a teen. Find out how she used determination and an incredibly positive attitude to overcome life’s challenges, and hear her advice for young adults with deaf-blindness.