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March 14, 2019

Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn

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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 ... Read more

March 12, 2019March 11, 2019

Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist

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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 ... Read more

March 7, 2019March 5, 2019

NIH Rare Disease Day Highlights Joint Networks Advancing Array of Research

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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 ... Read more

March 5, 2019

Study Suggests Blocking mTOR Signaling Pathway as Sjogren’s Strategy

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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 ... Read more

February 26, 2019

Gout Increases Risk of Sjögren’s Syndrome Among Elderly Patients, Study Shows

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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 ... Read more

February 25, 2019

WODC 2019 Organizers Expect 1,200 to Attend Rare Disease Conference in April

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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 ... Read more

February 21, 2019February 20, 2019

Vienna to Host RARE2019 Meeting on Rare Diseases

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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 ... Read more

February 19, 2019

Chromium May Contribute to Sjögren’s Development, Study Suggests

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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 ... Read more

February 12, 2019

Sjögren’s Patients Exhibit Different Personality Traits than Healthy Individuals, Study Suggests

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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 ... Read more

February 11, 2019February 11, 2019

Patients, Family and Friends to Take Part in Variety of Rare Disease Day Events Worldwide

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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 ... Read more

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