Scleroderma News

July 27, 2021July 27, 2021

US Patient Groups Give Thumbs-Up to Rule Against Surprise Billing

Scleroderma News

The National Organization for Rare Disorders (NORD) is applauding the Biden administration for announcing a rule to protect consumers from surprise medical billing, in a joint statement with 26 other ... Read more

July 22, 2021July 22, 2021

Physical Therapy Rarely Focuses on Hand, Mouth Problems, Study Finds

Scleroderma News

Nearly two-thirds of people with scleroderma undergo physical therapy — often called PT — and are generally satisfied with their care. But nearly half of all patients need more information ... Read more

July 20, 2021July 20, 2021

Partnership Aims to Lower Out-of-Pocket Costs for Rare Disease Meds

Scleroderma News

AllianceRx Walgreens Prime, a specialty and home delivery pharmacy, is partnering with TailorMed, a healthcare technology company, to help lower out-of-pocket prescription costs for specialty pharmacy patients. Medications attained through specialty pharmacies ... Read more

July 15, 2021July 15, 2021

Electrocardiograms to Monitor Heart Health Advised for SSc-PH Patients

Scleroderma News

Changes from the norm in the electrical conduction of the heart — called cardiac axis deviations — are “common” and indicative of poorer outcomes in people with systemic sclerosis-related pulmonary ... Read more

July 13, 2021July 13, 2021

Nominations Open for 2022 Eurordis Black Pearl Awards

Scleroderma News

Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. The 12 award categories recognize individual advocates, policy makers, researchers, organizations, and companies who work ... Read more

July 8, 2021July 8, 2021

Stem Cell-derived Tiny Vesicles Lessened Fibrosis, Inflammation

Scleroderma News

Under-the-skin treatment with tiny vesicles produced by mesenchymal stem cells significantly lessened skin abnormalities and scarring, while reducing markers of disease and inflammation, in a mouse model of scleroderma, a ... Read more

July 6, 2021July 7, 2021

Skin Fibrosis Worse When Lungs Involved, Study Finds

Scleroderma News

Scleroderma involving the lungs is associated with a greater degree of skin scarring, or fibrosis, according to a new research model that seeks to predict a person’s risk of organ-specific complications ... Read more

July 1, 2021July 1, 2021

Scleroderma Foundation More Than Doubles Research Funding to $2.7M

Scleroderma News

The Scleroderma Foundation is announcing that it has more than doubled its annual research funding, to $2.7 million, and increased the amount of its grant awards by $50,000, to $200,000. ... Read more

June 30, 2021June 30, 2021

Centogene Sets Mission to Cure 100 Rare Diseases in Next 10 Years

Scleroderma News

At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases within the next decade. A leader in the field of genetic diagnostics, ... Read more

June 29, 2021June 29, 2021

US Study Shows Urgent Unmet Need in Diffuse Cutaneous Scleroderma

Scleroderma News

Despite immunosuppressive therapy, skin and lung involvement still progresses in about 20% of people with early or at-risk diffuse cutaneous systemic sclerosis (dcSSc) within the first three years, according to ... Read more

June 24, 2021June 24, 2021

EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes

Scleroderma News

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 ... Read more

June 22, 2021June 22, 2021

Survey IDs Top Factors Influencing Raynaud’s Treatment Choice

Scleroderma News

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 ... Read more

June 18, 2021June 18, 2021

Get Ready for NORD’s Patient and Family Forum, Set for June 26-27

COVID-19 News, Scleroderma News

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the ... Read more

June 17, 2021June 17, 2021

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

Scleroderma News

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 ... Read more

June 15, 2021June 15, 2021

Gesynta Pharma Seeks OK to Assess GS-248 in Trials

COVID-19 News, Scleroderma News

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 ... Read more