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Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to help the continent’s 30 million rare disease patients and their caregivers learn about their conditions, find assistance and receive treatment. Eurordis-Rare Diseases Europe hopes to improve the current piecemeal treatment and support program with a holistic,…

People with rare diseases know that the right government policies can make a big difference in the quality of their own lives, and those of their caregivers. But most lawmakers aren’t experts in even one well-known disease — let alone the world’s estimated 7,000 rare disorders. So how does the…

Having a history of infections, particularly respiratory, skin, and urogenital infections, increases the risk of developing primary Sjögren’s syndrome, according to a population-based study in Sweden. The study, “Infections increase the risk of developing Sjögren’s syndrome,” appeared in the Journal of Internal Medicine. Environmental factors have…

Eye drops that contain a DNA-degrading enzyme are safe and potentially effective against eye damage and discomfort in people with dry eye disease, such as those who have Sjögren’s syndrome, early data from a Phase 1/2 trial show.

People with Sjögren’s syndrome have increased levels of specific signaling proteins in their tears and saliva, which are associated with more severe symptoms of eye and mouth dryness, a study finds. The study, “Elevated cytokine levels in tears and saliva of patients with primary Sjögren’s syndrome…

RaDaR, the catchy new name for the U.S. government-run Rare Diseases Registry Program, aims to help patient advocacy groups with limited resources build their own disease registries. The site was developed by the National Center for Advancing Translational Sciences (NCATS), a division of the National Institutes of…

Levels of the siglec-5 protein in saliva are significantly higher in Sjögren’s syndrome patients than in healthy people or patients with systemic lupus erythematosus (SLE), and correlate with the severity of disease symptoms, suggesting that the protein could serve as a salivary biomarker for the diagnosis of Sjogren’s syndrome. The study with…

With 250 rare diseases newly identified every year, scientists can barely keep up — even as the healthcare system fails millions of Americans whose rare diseases have already been diagnosed. That’s the warning from Christopher P. Austin, MD, director of the National Center for Advancing Translational Studies (NCATS) at…

Dental implants are a viable option for people with Sjogren’s syndrome, but these patients may experience a higher marginal bone loss around their implants than patients from the general population, a study shows. The study, “Dental implants in patients with Sjogren’s syndrome: a case series and a systematic review,”…

Cyporin N, a new formulation of cyclosporin A, provides faster relief of chronic dry eye triggered by primary Sjögren’s syndrome than Restasis, results from a Phase 3 trial show. The study, “Evaluation of the Efficacy and Safety of A Novel 0.05% Cyclosporin A Topical Nanoemulsion in…