The front side identifies the patient as having been diagnosed with the rare neurological disorder, superficial siderosis. The back side contains space for emergency contact and personal info along with a scannable QR code link to a page here on the SSRA website with information written for medical professionals. This card is available to all Superficial Siderosis Patient Registry Members
The Global Superficial Siderosis Patient Community
Our community is patients and caregivers from around the world.
The Global Superficial Siderosis Patient Registry
Registry members enter self-reported information to create a baseline health history
Creation Of An Extensive Database
Your information is aggregated into a longitudinal dataset for planning research
Get Started Today
The Superficial Siderosis Patient Registry is a confidential observational database of self-submitted information from individuals diagnosed with Superficial Siderosis. One goal of observational studies is to use your experiences to identify the issues important to you for targeted research.
By sharing your diagnostic and treatment journey, you help provide researchers with the data necessary to design informed studies and ultimately identify improved treatment options and outcomes for all Superficial Siderosis patients.
NIH U.S National Library of Medicine
Two-year observational study
of deferiprone in superficial siderosis
Treatment Response of Deferiprone in Infratentorial Superficial
Siderosis: a Systematic Review