iSACRA is a 501(c)(3) nonprofit based in the USA and is the world’s only international organization serving those living with the rare condition of sacral agenesis or caudal regression syndrome (SA/CRS). This website is a resource for those with this condition and their families as well as for medical professionals, educators, and the general public. It contains information about sacral agenesis or caudal regression syndrome, its characteristics, and its treatments. This website provides a glimpse into the lives and perspectives of individuals, children and adults who are living and thriving with this condition. The information contained on this site, and the links provided, are not intended to replace professional medical advice but hopefully will be helpful in advancing an understanding of this condition as experienced by those who live with it and are impacted by it.
Learning for the first time that the child you are expecting, or your newborn infant, or young child has sacral agenesis or caudal regression syndrome can be overwhelming. The condition is usually diagnosed before the age of 5, but because there is such a range in the way the condition impacts an individual, sometimes it is not discovered until much later in adulthood. While children, teens and adults with SA/CRS, and their parents, doctors, teachers, or employers may never have met others with this rare condition, iSACRA “meets” in an active Facebook group (facebook.com/groups/iSACRA). In this worldwide online format, support and information are shared generously with one another. Join us here.
The activities of iSACRA, include providing college scholarships, sending ‘buddy boxes’ for those anticipating medical procedures, hosting video-conferences on specific topics, developing informational materials about SA/CRS, and supporting local meet ups. These activities are planned and supported by the iSACRA board, comprised of adults with SA/CRS as well as parents of children with this condition. iSACRA also has a teen ambassador focused on peer connection and support. A renowned group of medical experts serve on the iSACRA medical advisory board.
