Category: Perspective

Our thoughts, views and perspectives on life, events, and support for superficial siderosis patients

The Ripple Effect Of Chronic Illness

The Ripple Effect Of Chronic Illness Most of us will never plan on becoming full-time caregivers. However, some will tackle this role with laser focus. There are no second thoughts or questions. Someone we love, a spouse, parent, or child,… Continue "The Ripple Effect Of Chronic Illness"

Touching The Positives

Touching The Positives I recently came across an interesting question, If you were cured today, what would you do? For people with a chronic condition or rare disorder, that’s a loaded question. What would you do just for yourself, for family… Continue "Touching The Positives"

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.