Scleroderma News

February 26, 2021February 26, 2021

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a young age, he also learned ... Read more

February 25, 2021February 25, 2021

Lower Back Pain Likely Drives Chronic Pain in Early Stages of Scleroderma

Scleroderma News

Although not a distinctive symptom of scleroderma, lower back pain is a major contributor to the chronic pain felt by people in the earliest disease stages, a study based on ... Read more

February 23, 2021February 23, 2021

Corticosteroids Plus Rituximab Not Likely to Injure Kidneys of SSc Patients

Scleroderma News

High doses of corticosteroids may be given alongside rituximab, used at lower doses, without affecting the kidneys of people with scleroderma, a study reports. The retrospective study, “Effect of short ... Read more

February 22, 2021February 22, 2021

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

COVID-19 News, Scleroderma News

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a ... Read more

February 19, 2021February 19, 2021

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

Scleroderma News

People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare ... Read more

February 18, 2021February 18, 2021

Poor Core Stability Evident in SSc Patients, Affecting Life Quality

Scleroderma News

Patients with scleroderma have poor core stability, as measured by trunk muscle strength and endurance, affecting both their physical capacity and daily performance, a Turkish study found. Previous studies largely ... Read more

February 16, 2021February 16, 2021

Fatigue, Raynaud’s Among Top Barriers to Exercise, Survey Finds

Scleroderma News

Common barriers to physical activity in people with scleroderma range from fatigue and poor hand dexterity to symptoms like gastrointestinal discomfort and stiff joints, a large and international patient survey reports. ... Read more

February 11, 2021February 11, 2021

FDA Grants Priority Review to Esbriet for Unclassifiable Interstitial Lung Disease

Scleroderma News

The U.S. Food and Drug Administration (FDA) has accepted and granted priority review to an application for Esbriet (pirfenidone) as a treatment for unclassifiable interstitial lung disease (UILD). The supplemental ... Read more

February 11, 2021February 11, 2021

Ziritaxestat Clinical Trials Discontinued

Scleroderma News

Galapagos NV and Gilead Sciences are discontinuing all clinical trials with the investigational medication ziritaxestat. This includes the long-term extension of the Phase 2a NOVESA trial in scleroderma, as well ... Read more

February 10, 2021February 10, 2021

Pandemic Won’t Stop Rare Disease Day on Feb. 28

COVID-19 News, Scleroderma News

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the ... Read more

February 9, 2021February 9, 2021

Autoantibodies Against Telomeres May Help Identify SSc With Lung Disease

Scleroderma News

Autoantibodies against proteins of the telomeres — the protective caps of chromosomes and a marker of lifespan — were found in scleroderma patients with lung disease and shorter telomeres, a ... Read more

February 4, 2021February 4, 2021

Work-related Crystalline Silica Exposure Linked to Higher Scleroderma Risk

Scleroderma News

In a study of the entire working population of Denmark, exposure to respirable crystalline silica — common in jobs in the construction industry — was linked to an increased risk of ... Read more

February 3, 2021February 3, 2021

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

Scleroderma News

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs ... Read more

February 2, 2021February 2, 2021

Tiny RNA Molecule Found to Regulate Collagen, Fibrosis in SSc-ILD

Scleroderma News

A tiny RNA molecule called microRNA-320a is associated with regulating collagen levels and fibrosis, or scarring, in systemic sclerosis (SSc) complicated by interstitial lung disease (ILD), a study reports. According ... Read more

January 28, 2021January 28, 2021

Differences in Activity of Various Genes May Drive Scleroderma

Scleroderma News

Small genetic variations that alter gene activity could play a role in the development of scleroderma and open new avenues for treating the disorder, a study indicates. Many of the ... Read more