international sacral agenesis/caudal regression association iSACRA

Mission

iSACRA provides support and information to persons with sacral agenesis/caudal regression syndrome and their families worldwide. iSACRA promotes awareness and collaborates in research and advocacy to enhance the quality of life of persons with this condition and to advance medical knowledge.

iSACRA is an organization started by a young teen with a rare medical condition. The organization has achieved a membershp of over 600 people worldwide, most located in the US and UK, but also as far away as Fiji and Saudi Arabia. Goals include developing information packets for medical professionals, new parents of children diagnosed with SA/CRS, and individuals with this condition. The organization held it's first fund raiser, a 5K event, in northern Virgnia this past May. Most of the support for families and individuals occurs through facebook group interaction. As a nonprofit, the organization is registered nationally in the US and also in 30 states.