The World of Digital Awareness

Sharing Our Rare Disorder Journey As part of our awareness campaign this September, our SS community members from around the world joined together to create a footprint in the world of digital awareness. This short video is available for viewing on several social media platforms and offers a unique window into the superficial siderosis patient rare disorder journey. When you […]

A Tough Decision

Deciding to Start a Charity is a Tough Decision I remember when we heard our daughter had Superficial Siderosis several years ago, we did not know what to do or think. She had no symptoms, she had been in a car accident about four years prior and we had scheduled an MRI because another doctor noticed her tongue had some […]