Our Mission

Patient Education

Our primary mission is to provide comprehensive, up-to-date, research-based information on systemic scleroderma diagnosis and treatments written in a manner that patients can readily understand.  We believe that patients who are thoroughly educated about their disease can work more effectively with their team of physicians to make the best possible individual care decisions.

Clinician Resources

Most patients who end up diagnosed with systemic sclerosis are initially seen by clinicians who do not specialize in this rare disease and may not be up-to-date on scleroderma diagnosis and treatments.  The Scleroderma FAQ can be a helpful starting point for clinicians who are not scleroderma specialists in understanding current research-based approaches to scleroderma diagnosis and treatments.  Additional resources such as the ANA and antibody testing series also provide practical information that can be helpful in systemic sclerosis diagnosis.

Research

Current systemic scleroderma (SSc) treatment research focuses on two stages of the disease process: (1) immune system regulation / suppression, and 2) drugs that slow or stop fibrosis.  To date, neither of these treatment approaches has been shown to be effective in fundamentally slowing SSc disease progression.

While SSc is a complex disease that is not fully understood, research indicates that SSc is a disease of the microvascular system where repeated damage to the lining of the smallest blood vessels leads to the fibrotic processes that trigger the entire symptom cascade.  There is a significant body of research that documents abnormal blood rheology (increased overall blood viscosity and abnormal clumping of red blood cells) in people with SSc.  Our research focus is on better understanding the role of this abnormal blood rheology in systemic sclerosis pathogenesis and determining if treatments that target this early stage of the disease process may be more effective and safer than current treatment approaches that focus on immunosuppression.