iSACRA is the world’s only 501(c)(3) organization serving individuals with the rare condition of sacral agenesis/caudal regression syndrome (SA/CRS). When you have a rare condition, you know all too well:
- Lack of awareness can lead to incorrect diagnosis, delayed diagnosis, out-dated or incorrect treatments, misconceptions about quality of life, and barriers to educational and other social services.
- Having a rare condition is isolating. Many individuals with SA/CRS have never met another person like themselves.
- Resources and equipment specifically designed for the unique needs of individuals with SA/CRS are hard to come by.
iSACRA raises funds to address the areas of:
AWARENESS: We raise awareness by maintaining an informational website and through development, publication and dissemination of informational materials both in print and online.
CONNECTION: We provide opportunities for individuals with SA/CRS and their families to come together through support of local meet-ups, mini-conferences and webinars.
RESOURCES: We provide assistance through reimbursement of mailing costs for sharing of specialized equipment among those with SA/CRS.
A dedicated all-volunteer group works steadily behind the scenes to support these efforts.