Finding treatments and potential cures for rare diseases is crucial, but so is the quality of patients’ lives — a rather nebulous term that means different things to different people. “Recently, there’s been much more of a focus on Quality of Life (QoL) issues, real-world evidence and patient-reported outcomes,” said…
News
LO2A eye drops significantly improve dry eye symptoms in Sjögren’s syndrome patients, according to a small Phase 2 clinical study performed in Hungary. The findings were presented at the Association for Research in Vision and Ophthalmology (ARVO) Annual Meeting, on May 2 in Honolulu, Hawaii, in the poster presentation “…
Patients with primary Sjögren’s syndrome and joint inflammation are significantly more likely to have severe or very severe dry eye, according to a multi-center study in Spain. The finding suggests a potential new strategy to identify signs of the disease that may lead to early treatment. The study, “Factors associated…
Researchers recently identified an autoantibody — an antibody produced against a person’s own tissue or molecule — significantly associated with the peripheral nerve damage common in Sjögren’s syndrome patients. This finding may help scientists understand the cause and development of peripheral nerve damage in this autoimmune disease, as well as…
The 2018 Walk for Sjögren’s in the greater Washington, D.C., area will take place Saturday, May 19 in Reston, Virginia, to raise awareness for Sjögren’s syndrome. Walk for Sjögren’s is a national event created by the Sjögren’s Syndrome Foundation to increase awareness and raise money to support…
The National Organization for Rare Disorders (NORD) will celebrate the 35th anniversary of both the 1983 Orphan Drug Act and NORD’s founding at a dinner tonight in Washington, D.C. The 2018 Rare Impact Awards, to be held at the Andrew W. Mellon Auditorium, will be webcast via Facebook for those…
The European Union isn’t doing enough to protect the 30 million or so people with rare diseases who live in its 28 member countries, officials meeting last week in Vienna said. More than 900 people from 58 nations attended the 9th European Conference on Rare Diseases & Orphan Drugs (ECRD),…
Raynaud’s phenomenon and liver injury are among the risk factors for the development of pulmonary arterial hypertension (PAH) – high blood pressure in the arteries that goes from the heart to the lungs – in primary Sjogren’s syndrome (pSS) patients, a new study shows. The research, “…
Adding supplements of epidermal growth factor — a signaling protein — to the current treatment regimens of Sjögren’s syndrome, may improve oral damage and quality of life in patients with the disease, a new study suggests. The study, “Deterioration in saliva quality in patients with Sjögren’s syndrome: impact of decrease…
Blocking the signals from interleukin-7 (IL-7) — a protein involved in T-cell development and normal functioning — reduces the clinical manifestations of Sjögren’s syndrome in mice, research shows. These findings suggest that IL-7 and its receptor are important contributors for the autoimmune response in Sjögren’s syndrome, and could represent…
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