Category: Vision

It was late 2014. Gary and I were waiting in his new ophthalmologists exam room when I wondered why is it so many of the superficial siderosis related conditions seem impossible to pronounce without a medical degree? Silly I know, but… Continue "Eye on Nystagmus"

Neurodegenerative Vision Problems

You move your eyes more often than your heart beats. Vision problems are one of the mysterious, unexplained symptoms people are plagued with long before their doctor knows what is wrong. While not as frequent as sensorineural hearing loss or… Continue "Neurodegenerative Vision Problems"

Our Philosophy

We believe sharing our superficial siderosis experiences is necessary because when patients and caregivers share real-world data, worldwide collaboration becomes possible. More importantly, change becomes possible. Our goal is to bring the superficial siderosis global patient community together with mutually beneficial goals. Support research funding to aid in the discovery of new therapies, share ideas, educate, and advocate for our community members.We encourage clinicians, researchers, and academics to submit questionnaires to the Superficial Siderosis Patient Registry. No one understands how Superficial Siderosis symptoms change the lives of both the patient and caregivers better than our community.