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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.

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Opportunities

Investigators, graduate or post-graduate projects are invited to become a reseach alliance partner with access to our global observational
database

Learn How

SSPR Partners

Superficial Siderosis Research Alliance

Superficial Siderosis Clinic and Research Laboratory

REDCap Consortium

Learn More

Patient Resources

Visit our information hub or join an active online SS community ready to offer support. Understand Superficial Siderosis and find the most current information

Find Help

Active Studies



NIH U.S National Library of Medicine
Find Trials

Iron Chelation



Two-year observational study
of deferiprone in superficial siderosis

Deferiprone


Treatment Response of Deferiprone in Infratentorial Superficial
Siderosis: a Systematic Review