COMING SOON: ileak registry℠

COMING SOON: ileak registry℠

Jun 7, 2024 | News

We’re proud to announce that the Spinal CSF Leak Foundation’s international patient registry will be launching this fall! Growing a registry takes patience, with many steps from initial conception to implementation. And once it’s ready to launch, it...
Partnering with NORD® to create a patient registry

Partnering with NORD® to create a patient registry

Jun 9, 2023 | News

Spinal CSF Leak Foundation is proud to announce that we are partnering with NORD® to create a registry for spinal CSF leak patients.   The National Organization for Rare Disorders is an independent nonprofit that built its IAMRARE® online registry platform as...