Tag: Chronic Fatigue

Camping with a Chronic Illness

No, I’m sorry we can’t. It’s become our standard answer to most invitations now. Our niece sent a text last month. Hey, we’re going skydiving do you guys want to come? I was so shocked I asked if she meant…

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.