Madeline Collin, a 24-year-old activist with Gaucher disease, worries that patients like her will suffer deeply if Britain leaves the European Union (EU), as scheduled, at the end of this month. Collin is an expert on the subject. For her University of Bath dissertation, she analyzed Brexit’s long-term…
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With each new advance in medicine comes ethical dilemmas, from fertility treatments and newborn screening, to vaccinations, gene therapies and euthanasia. But rare diseases and the expensive therapies needed to treat them — particularly in an age of scarce economic resources — almost always entail “tragic choices,” warned Avraham Steinberg,…
Rare diseases affect about 30 million Americans — roughly the same number as those with type 2 diabetes. Yet only 5 percent of the estimated 7,000 rare diseases known to science have cures or treatments approved by the U.S. Food and Drug Administration (FDA). Raising awareness of those illnesses and highlighting…
Targeting the mTOR signaling pathway may prevent the increased activation and proliferation of immune cells in the salivary glands of patients with primary Sjögren’s syndrome (pSS), according to new research. The study, “Increased mTORC1 activation in salivary gland B cells and T cells from patients with Sjögren’s…
Gout — a form of inflammatory arthritis that causes sudden attacks of severe pain and swelling around the joints — increases the risk for Sjögren’s syndrome among elderly patients, a U.S.-based, large-scale study shows. The study, “The Risk of Sjogren’s Syndrome in the Older adults with Gout: A…
The world’s biggest gathering of rare disease researchers, patient groups, pharmaceutical executives, and government officials is planned for April 10–12 in a Washington, D.C., suburb. Some 1,200 people have already registered to attend the World Orphan Drug Congress (WODC) USA 2019, set to take place at the Gaylord National Harbor…
About 100 scientists, researchers, pharmaceutical executives, and others will converge on Austria’s capital city early next month for the 2nd International Congress on Advanced Treatments in Rare Diseases. The March 4-5 meeting, to take place at the Hilton Am Stadtpark Vienna, features 27 speakers on a variety of disorders…
Higher-than-normal levels of chromium in the soil seem to be associated with an increased prevalence of Sjögren’s syndrome in Taiwan, suggesting chromium as a possible environmental risk for the condition. The study, “Increased prevalence of Sjogren’s syndrome in where soils contain high levels…
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Sjögren’s Patients Exhibit Different Personality Traits than Healthy Individuals, Study Suggests
Patients with primary Sjögren’s syndrome may have different personality characteristics, including a tendency to be more neurotic and less extroverted and open to experiences, than healthy individuals, a study reports. The study, “Personality, depression and anxiety in primary Sjogren’s syndrome — Association with sociodemographic factors and…
Scores of events are afoot worldwide to mark Feb. 28, Rare Disease Day 2019. The activities aim to raise awareness about rare diseases and the millions of people — estimates run as high as 350 million — they are thought to impact. Across countries, patients, caregivers and advocates will paint faces, wear…
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- Patients, advocates working this month to raise awareness of Sjögren’s
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- Initial data from trial testing CLN-978 in Sjögren’s expected this year
- Sjögren’s disease may increase risk of certain digestive cancers: Korean study
- Sjögren’s patients face ‘invisible’ symptoms, lack of understanding
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