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…
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…
Mary J. Wheatley will succeed Robert J. Riggs as CEO of the Scleroderma Foundation, an organization dedicated to supporting scleroderma patients, promoting public education concerning the disorder, and helping to fund research into effective treatments and a possible cure. The change will be effective July 1. “This is…
People with weakened immune systems, such as those with scleroderma, should continue taking all COVID-19 precautions, even if fully vaccinated, according to guidelines from the Centers for Disease Control and Prevention (CDC). “The Scleroderma Foundation’s MSAB [Medical & Scientific Advisory Board] Leadership Committee agrees with the CDC…
A remote, peer-facilitated group intervention created to provide mental health and social support during the COVID-19 pandemic significantly eased anxiety and depression in adults with systemic scleroderma and mild anxiety, according to data from the SPIN-CHAT trial. Differences between the group of patients who underwent the one-month intervention…
Ofev (nintedanib) safely and effectively slowed lung function decline in people with interstitial lung disease (ILD) associated with systemic sclerosis (SSc-ILD), according to an interim analysis of the ongoing and long-term SENSCIS-ON study. “The SENSCIS-ON trial provides important new evidence about the longer-term use of nintedanib [Ofev] in people living…
The Scleroderma Warriors Project is expanding its online presence with an updated website and online communication platform to support the scleroderma community. The new platform will create an online community to connect scleroderma patients, families, and…
The Scleroderma Foundation invites people to participate in Stepping Out to Cure Scleroderma, a combination of outdoor and virtual fundraising events to support patients and their families, and research into potentially curative treatments during scleroderma‘s awareness month. Local Scleroderma Foundation chapters organized group Stepping Out runs and…
Scientists have identified a mechanism of scar formation in the skin, and demonstrated in mouse models a way to heal wounds to create normal skin instead of scar tissue,  a study revealed. Their work could have implications for treating people with scleroderma. Modulating…
Distinct profiles of gene activity in skin samples distinguish different disease stages in juvenile localized scleroderma, a study suggests. These profiles did not necessarily match the patients’ clinical subtype or the disease’s location on the body, suggesting that they may better represent distinct and clinically relevant subgroups of patients,…
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