Supervised rehabilitation combining a whirlpool bath with active exercises and hand and elbow massages may improve hand and overall function in people with scleroderma, a study from Poland reported. Its findings suggest that a four-week rehabilitation program may be enough for these benefits to last up to six months…
The fecal microbiome — the community of microbes present in stools — of scleroderma patients is more diverse than that of healthy people, according to a Canadian study. The findings also showed that the diversity and abundance of bacterial species in the stools was higher among patients with an abnormal…
Registration is now open for Global Genes‘ 2021 RARE Patient Advocacy Summit. This year’s hybrid event will be livestreamed from California Sept. 27-29, and some seats also are available for attending the event in person in San Diego. “Here you’ll have the opportunity to connect and engage with others…
Sexual dysfunction is common among both men and women with scleroderma (SSc), a review study says. According to the researchers, closer consideration of sexual dysfunction is warranted as it impairs patients’ quality of life. “Paying greater attention to the sexual function of patients with SSc is meaningful because sexual…
High levels of a protein known as CTRP9 appear to indicate worsening lung function in patients with systemic scleroderma (SSc), according to a recent study. The discovery suggests that CTRP9 may be a useful biomarker for the loss of lung function in SSc. Such biomarkers are sorely needed, researchers…
Registration is now open for the 2021 Rare Diseases and Orphan Products Breakthrough Summit, which will be held virtually Oct. 18–19. The event, also known as the National Organization for Rare Disorders (NORD) Summit, brings the rare disease community together to network and discuss developments in treatments and research…
More than 600 people participated in the 10th annual Rare Disease Week on Capitol Hill 2021, held virtually July 14–22, to advocate for the rare disease community. Hosted by the EveryLife Foundation’s Rare Disease Legislative Advocates (RDLA) program, the event brings together community members from across the U.S. to…
Nearly 30% of scleroderma patients have nerve damage outside of the brain and spinal cord — called peripheral neuropathy — and it most frequently appears in the first decade after disease onset, according to a review study. Notably, this frequency is higher than that reported for the general…
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…
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