It wasn’t until Gordana Loleska’s son David was 14 years old that doctors in their native North Macedonia diagnosed his kidney, vision, and hearing problems as Alport syndrome. Although she had known for years that something was wrong, the news that David would battle a lifelong rare disease devastated…
News
Immune regulatory B-cells (Bregs) are less abundant in patients with primary Sjögren’s syndrome, and are inversely correlated with disease activity, a study suggests. Therefore, low blood Bregs may help to discriminate between patients and healthy subjects, and assist doctors in diagnosis, especially when patients lack the classical…
A violinist with vasculitis, two Texas politicians and a pharmaceutical company whose marijuana-derived therapy helps kids with Dravet syndrome were among winners of the 2019 Rare Impact Awards. Officials of the National Organization for Rare Disorders (NORD) presented the awards during a June 22 dinner attended by…
Pain, depression, and daytime sleepiness are significantly associated with both mental and physical fatigue in patients with primary Sjögren’s syndrome, even after adjusting for comorbidities and medication, a new study shows. Management of fatigue in these patients should thus be tailored to each patient, depending on potential contributors, and focused…
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…
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