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March 18, 2019March 18, 2019

Unusual Case Cites Infection as Possible Trigger of Sarcoidosis

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A study reporting the case of a sarcoidosis patient infected with the bacteria Borrelia burgdorferi highlights the importance of maintaining an increased awareness about potential infectious conditions, such as Lyme disease, ... Read more

March 15, 2019March 15, 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 12, 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 11, 2019March 11, 2019

Investigational Therapy ATYR1923 May Relieve Lung Inflammation, Preclinical Data Show

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The investigational therapy ATYR1923 for pulmonary sarcoidosis may help decrease lung inflammation by halting the infiltration of immune cells called neutrophils into the lungs, according to a preclinical study ... Read more

March 6, 2019March 6, 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

February 25, 2019February 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 20, 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 18, 2019February 18, 2019

Familial Sarcoidosis Prevalent in Certain Populations Worldwide, Review Suggests

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A literature review of research performed in specific populations from countries worldwide estimated a heritability of 60 to 70 percent for familial sarcoidosis, a study has found. The study ... Read more

February 12, 2019February 12, 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

February 11, 2019February 11, 2019

Uncommon Case of Sarcoidosis Found in ARDS Patient, Study Reports

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A case study diagnosing sarcoidosis upon autopsy in a patient with acute respiratory distress syndrome (ARDS) of unknown cause highlights the importance of physicians taking into account this uncommon disease ... Read more

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