Outside Links
Medical Home Portal
http://www.medicalhomeportal.org/diagnoses-and-conditions/cornelia-de-lange-syndrome/description
NORD: National Organization for Rare Disorders
NORD is dedicated to help people with rare "orphan" diseases and assisting the organizations that serve them.
http://www.rarediseases.org
NICHCY: National Dissemination Center for Children with Disabilities
NICHCY serves the nation as a central source of information on disabilities in infants, toddlers, children, and youth, IDEA, which is the law authorizing special education, No Child Left Behind (as it relates to children with disabilities), and research-based information on effective educational practices.
http://www.nichcy.org
Cure the Process
The CURETHEPROCESS Campaign strives to inspire science-driven public policy that will increase the predictability of the regulatory process for rare disease treatments.
http://www.curetheprocess.org
TASH
TASH is an international association of people with disabilities, their family members, other advocates, and professionals fighting for a society in which inclusion of all people in all aspects of society is the norm
http://www.tash.org
CdLS World
http://www.CdLSworld.org
CdLS Online Support Group
http://groups.yahoo.com/group/cdls-kids/
Resources for Siblings