News

EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

Survey IDs Top Factors Influencing Raynaud’s Treatment Choice

An international survey found that the ability to use one’s hands, physical symptoms, and the chance to prevent more severe problems are among the top factors taken into account by scleroderma patients when considering a therapeutic regimen for Raynaud’s phenomenon. Raynaud’s is a condition in which the fingers and toes…

Protein’s Levels in Blood May Mark SSc Patients at Risk of PAH

Blood levels of the protein endocan may be a potential biomarker in identifying people with scleroderma who are at risk for pulmonary arterial hypertension (PAH), a study reported. The study, which supported previous findings regarding this protein, was titled “Endocan and Circulating Progenitor Cells in Women with Systemic…

Gesynta Pharma Seeks OK to Assess GS-248 in Trials

Gesynta Pharma has submitted an investigational new drug (IND) application to the U.S. Food and Drug Administration (FDA) seeking approval to test its oral therapy, GS-248, in clinical trials with systemic sclerosis (scleroderma) patients. GS-248 is an experimental therapy being developed for conditions characterized by microvascular disease, including systemic sclerosis.

Efforts to Educate Mark Scleroderma Awareness Month This June

From joining a walk-a-thon to sharing videos of themselves saying the rare disease’s hard-to-pronounce name, supporters are marking Scleroderma Awareness Month, observed each June. World Scleroderma Day is June 29. The mission is to raise awareness among the general public and to educate policymakers, public authorities, industry representatives, scientists, and…

IBS Laxative Linaclotide Can Help Manage GI Issues in Scleroderma

Linaclotide, an oral medication to treat constipation, is safe and well-tolerated, and can be used to manage difficult-to-treat gastrointestinal (GI) complications in people with scleroderma, a study has found. Results show that low-dose treatment with linaclotide is effective and may be better tolerated, though some patients may require higher…