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.
The condition of sacral agenesis or caudal regression syndrome (SA/CRS) may be rare, but 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.
Meeting a friend who shares the same rare condition that you do is a life changing experience! We have many ways for you to connect with us.
You are welcome to reach out to us at contact@isacra.org or complete a contact form in our Community Connection and join one of our Facebook groups for ongoing information and support.
Also download our informational flyer on iSACRA and SA/CRS. It’s great for sharing with medical and school professionals and even family members and friends.
iSACRA is a 501(c)(3) organization. We welcome your support through donations via our website and purchases via our external webshop links. Also don’t forget to select us for support on your AmazonSmiles purchases.