Category: Superficial Siderosis

Tips For Improved Patient-Physician Communication

Patient to Physician Communication a two-way street Quite often, patients with a rare condition experience a variety of complex symptoms. Do not let an appointment with your doctor leave you feeling as confused. Healthcare providers are constantly under pressure to…

Life Expectancy of Superficial Siderosis Patients

Superficial Siderosis Life Expectancy It’s human nature to wonder How long will I live? When you’ve been diagnosed with a life-changing ultra-rare disorder like superficial siderosis, thoughts like this can consume you. Superficial Siderosis Life Expectancy, four words make it…

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.