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With more than 1,500 individuals connected worldwide, iSACRA is a vibrant and active community of adults and teens with SA/CRS and parents of children with SA/CRS. We connect with extended family members, medical professionals, educators, and other supporters. iSACRA is also a member of three organizations focusing on rare conditions,  NORD, the National Organization for Rare Disorders ,Eurordis Rare Diseases Europe, and GARD.  the Genetic and Rare Diseases Information Center. 

Sacral agenesis, also called caudal regression syndrome (SA/CRS), is a rare congenital condition in which the lower part of the spine does not fully develop. The absence of the lower spine and spinal cord potentially also impacts the formation and function of lower parts of the body such as the legs and pelvis and organs such as the kidneys.  The way that the condition can impact individuals varies greatly.  Regardless of the range of physical characteristics that an individual with this condition might experience, you will see on this website that individuals with this condition know no limits and are fully capable of living happy, successful and productive lives.