News

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…

Sleep problems are common in primary Sjogren’s syndrome patients and seem to worsen symptoms of fatigue and pain, affecting the ability of patients to perform daily activities, according to researchers from the U.K. But a focus group study reports Sjogren’s patients are generally open to tailored sleep therapy interventions as…

At least 800 people representing some 45 countries are soon expected to gather in Austria’s capital city, Vienna, for ECRD 2018, the 9th European Conference on Rare Diseases and Orphan Products. The May 10-12 meeting is sponsored by Eurordis, the Paris-based group that defines itself as a “patient-driven alliance”…

In rare cases, patients with Sjögren’s syndrome may develop an unusual degradation of the kidney’s filtering system — a condition called fibrillary glomerulonephritis — a case report shows. While this is only the third case describing this association, the study adds Sjögren’s to the list of disorders linked to fibrillary…

Under the supervision of a computer science professor at Knox College, students are applying their recently-learned skills in developing apps designed to help people living with Sjögren’s syndrome. The professor, Monica McGill, began researching Sjögren’s after her daughter was diagnosed with the disorder five years ago. After collecting some…

Decreased levels of memory B-cells, a kind of white blood cell, may help diagnose patients with primary Sjögren’s syndrome and determine the severity of their disease, a new study shows. Tests based on memory B-cell levels potentially could be used as disease markers for predicting outcomes and tracking the effect…