We believe sharing our Superficial oSiderosis experiences and symptom history is necessary. Why ? Because when patients and caregivers share real-world data, collaboration on a worldwide scale becomes possible. New treatments become possible. Most importantly, change becomes possible. Our goal is about bringing Superficial Siderosis patients and caregivers together for a higher purpose: speeding up the pace of research, discovering new or improving current treatments, and offering some hope.
Currently, most healthcare data is inaccessible due to privacy regulations. As a result, research is slow. Developing breakthrough treatment takes years. It doesn’t have to be that way. When we share our data, we open up the possibility of encouraging academic study, engaging medical students, and hopefully, we can help researchers.
We want to encourage clinicians, researchers, and academics to submit questionnaires or make contact. No one understands how the symptoms of Superficial Siderosis change the lives of both the patient and caregivers better than we do.
This patient registry enables you to help effect change. Our numbers are small in comparison to other rare diseases. We are scattered around the world. We believe that by use of the Internet and this registry we can geographically locate our numbers, collect patient and caregiver information and hopefully accelerate research.
We believe our data belongs to us, the patient.
Will you join us by adding to our collective knowledge and help change the course of those diagnosed with Superficial Siderosis?