News

Some patients with systemic scleroderma (SSc) appear to develop breast cancer with a good prognosis, a small study has found. The findings suggest reducing exposure to cancer therapies, namely chemotherapy and radiotherapy, which should be limited to higher-risk patients. The study, “Clinical and pathological features of breast cancer…

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 U.S. patient organizations. The interim final rule will implement patient protections required by the No Surprises Act. Surprise…

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 on such treatment, according to the results of a questionnaire conducted in the Netherlands. Individual therapy, provided by…

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 are those used to treat rare and chronic conditions in the U.S., and are often extremely costly. For…

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 hypertension (SSc-PH), a study reported. Because cardiac axis deviations are easily measured by electrocardiography (ECG), monitoring for such deviations…

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 to make a difference for the global rare disease community. The deadline for nominations is Sept. 10…

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 study showed. Notably, these beneficial effects — similar to those of treatment with the bone marrow-derived mesenchymal stem cells…

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 involved in that disorder. The study, “Correlation Between Skin and Affected Organs in 52 Sclerodermic Patients…

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. To accommodate the change in funding opportunities — effective for the 2022 grant-funding cycle — the nonprofit organization has…

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, Centogene used the June 22 event to present its strategic priorities, outlining its plans to speed the discovery…