We believe sharing our superficial siderosis 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 to bring Superficial Siderosis patients and caregivers together for a higher purpose: speeding up the pace of research, discovering new or improving current treatments, and offering 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 helping researchers.
We 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.
Our community-powered patient registry website, superficialsiderosispatientregistry.org, 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 pinpoint our numbers, collect patient and caregiver information and hopefully accelerate research.
Will you join us by adding to our collective knowledge and help change the course of those diagnosed with Superficial Siderosis?