International Bloom Syndrome Registry
The Bloom Syndrome Association is developing the International Bloom Syndrome Registry (IBSR), a secure, global research resource that will help improve understanding and care for individuals with Bloom syndrome. The registry is currently undergoing development and will undergo IRB review. Once approved, participation will be open to individuals worldwide through a secure online platform hosted by the National Organization for Rare Disorders (NORD). More information will become available when the IBSR is launched in late 2025.