Our Mission

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.  While most of the information on our website is written to educate patients and family members, we also include more technical articles that are targeted at non-specialist clinicians who are seeking advanced information on complex topics such as ANA and antibody testing, ANA-negative scleroderma, or the new 2013 ACR/EULAR Classification Criteria for diagnosing patients with systemic scleroderma.

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.  We believe that this abnormal blood rheology may directly lead to the microvascular damage that triggers the SSc symptom cascade. This suggests that the key to developing more effective and safer treatments is to fully understand the nature of this abnormal blood rheology, and to develop new treatment approaches that target this early stage of the disease process before systemic damage occurs.