News

Rates of SSc, Raynaud’s Likely Higher Among Post-9/11 Veterans

A higher rate of systemic sclerosis (SSc), very early diagnosis of systemic sclerosis (VEDOSS), and Raynaud’s phenomenon is evident among U.S. military veterans deployed in support of post-9/11 operations, compared with the general population, a study suggests. The data, obtained through Veterans Health Administration (VHA) health records, highlight…

Blood Proteins Profiles May Serve as Biomarkers of Scleroderma Severity

Distinct levels of proteins in the bloodstream of scleroderma patients matched altered gene activity in their skin, a large-scale molecular analysis showed. Researchers said these blood proteins could prove to be much-needed biomarkers for this chronic disease. “These results indicate that [blood] proteins are attractive surrogate markers for tracking…

Scleroderma Outcomes Often Worse for Blacks, US Study Finds

Black patients with scleroderma are at higher risk of mortality and serious complications such as interstitial lung disease than those of other racial or ethnic groups, a single-center U.S. study found. These findings may foster early monitoring of these patients as well as greater awareness among clinicians, researchers…

Rare Disease Groups in US Join in Plea for Care Across State Lines

Over 230 national organizations signed a letter urging all 50 U.S. state governors to “maintain and expand” flexibility with licensure requirements for the duration of the COVID-19 pandemic to ease access to care. During the pandemic, governors used emergency authority to waive certain state licensure requirements, giving healthcare providers…

RARE-X, Global Genes to Help Collect Rare Disease Patient Data

In their continued efforts to improve health equity for people with rare diseases, Global Genes and RARE-X have joined forces to help advocacy groups collect patient data and make the most of that information. “Patient data is perhaps the most valuable asset rare disease communities can leverage to…

Ofev Seen to Slow Lung Function Decline Across SSc-ILD Subgroups

Ofev (nintedanib) effectively slowed lung function decline in adults with interstitial lung disease (ILD) associated with systemic sclerosis (SSc-ILD) across patient groups based on autoantibody status and skin involvement severity, according to an analysis of the SENSCIS trial. These findings add to the trial’s top-line results,…