The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in Cleveland, Ohio. The event, which brings together the rare disease community, will take place at the InterContinental Cleveland Conference…
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The immunosuppressant Rituximab may ease arthritis — an inflammation of the joints — in patients with long-standing systemic sclerosis (SSc), a small Turkish study found. Moreover, in some patients, skin and lung symptoms either remained stable or eased, the researchers also observed. “The factors and markers affecting the treatment…
June is Scleroderma Awareness Month, and the scleroderma community is working to increase awareness of this rare disease with several campaigns. In a video released at the start of the month, the National Scleroderma Foundation is asking everyone to “know scleroderma.” “To know scleroderma is to understand…
Autologous hematopoietic stem cell transplant (AHSCT) eases skin scarring in people with diffuse systemic sclerosis (SSc) by tweaking the levels of molecules involved in tissue remodeling and inflammation, a study from Brazil reported. The study, “Autologous hematopoietic stem cell transplantation promotes connective tissue remodeling in systemic sclerosis patients,” was…
Therapeutic plasma exchange may help ease digestive issues in people with limited systemic scleroderma (lcSSc), new research indicates. Edward Harris of the Scleroderma Education Project presented the findings at the American Society for Apheresis (ASFA) annual meeting in Philadelphia earlier this month, in a poster titled, “The Effects…
To kick off Scleroderma Awareness Month, the Scleroderma Research Foundation (SRF) will host a free online patient forum, Collaborating for a Cure, on June 1. The half-day forum will gather leaders from the medical and scientific community so that those who live with scleroderma, and their families and…
Patients with two rare subtypes of systemic sclerosis (SSc) — based on the presence of specific antibodies and the extent of skin involvement — have mild disease courses and specific clinical features, symptoms, and outcomes, a study shows. The data also confirmed that the presence of anti-topoisomerase-I autoantibodies (ATAs)…
People with systemic scleroderma (SSc) who have certain autoantibodies are at increased risk of developing pulmonary hypertension, or high pressure in the blood vessels of the lungs, according to a study in the U.S. Researchers also observed that patients who tested positive for these autoantibodies, called anti-Th/To antibodies,…
Among people with systemic scleroderma (SSc), those who have digital ulcers (DUs) — sores on their fingers or toes — tend to use more healthcare resources, a new study suggests. “Our study demonstrates increased health resource utilization by SSc patients with DUs compared to those without DUs in a…
Local injection with botulinum toxin A (BTX-A) safely and effectively reduces Raynaud’s phenomenon (RP) and nailfold small blood vessel, or capillary, abnormalities in women with scleroderma, according to data from a small study in China. Treatment also led to significant improvements in upper limb function in women with…
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