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…
Infection was the leading cause of acute hospitalization and mortality in people with systemic sclerosis (SSc), a 10-year hospital study in Portugal found. Although most infection-related hospital admissions occurred in those with underlying lung disease, the scientists noted that a decrease in the total number of hospitalizations during the…
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 (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,…
Cudetaxestat, a potential anti-scarring medication, has been granted orphan drug status by the U.S. Food and Drug Administration (FDA) for the treatment of scleroderma. “There are limited options and high medical need for patients suffering from systemic sclerosis [SSc, or scleroderma],” Daven Mody, vice president of regulatory affairs…
Global Genes has partnered with the Rare Disease Diversity Coalition (RDDC) to advance health equity for rare disease patients and caregivers in underrepresented communities of color. “For rare disease patients, there are many challenges — and for people of color with a rare disease, these challenges are compounded…
A celebrity lineup is slated for an upcoming fundraiser by the Scleroderma Research Foundation (SRF) to support disease research. The Cool Comedy, Hot Cuisine event will be livestreamed on Sunday, Oct. 17, at 5 pm PDT or 8 pm EDT. Tickets, starting at $100, can be purchased…
The Rare Disease Diversity Coalition (RDDC) awarded $600,000 in grants to ease the disparities faced by rare disease patients of color. These Impact Rare Disease Solution grants will go five RDDC steering committee working groups, which aim to identify problems for rare disease communities and advocate for solutions. The five…
A crowdfunding campaign aims to raise $45,000 to support “Rare,” a documentary film featuring the struggles and achievements of people living with rare diseases and their families. Sweis Entertainment and Digital Cave Media launched the campaign — allowing filmmakers to finish producing and to release the documentary — on Kickstarter.
Bionews Insights is launching a new survey, in collaboration with Scleroderma News, with the goal of understanding how different aspects of disease affect an individual’s quality of life. The survey, which is expected to take approximately 15 minutes to complete, will use the WHOQOL-100 questions, developed by the World…
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