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A little-known government entity within the National Institutes of Health (NIH) is helping to lead U.S. efforts to speed up the development of therapies for some 7,000 rare diseases. The Office of Rare Diseases Research (ORDR), headquartered in Bethesda, Maryland, was established in 1993 within the NIH Office of the…

The American Lung Association, CHEST Foundation and the Foundation for Sarcoidosis Research (FSR) teamed up to bring greater awareness to sarcoidosis and encourage patients to be more proactive in their treatment programs. The joint effort,…

A recent study found that migraines are at least as common in patients with sarcoidosis as they are in the general public, and they affect women more than men. The study’s authors highlighted the need for better recognition and targeted treatment of migraine in people with sarcoidosis. The study, “…

A wearable cardioverter-defibrillator can prevent sudden death in patients with cardiac sarcoidosis, new research demonstrates. A study found the device was capable of restoring heart rhythm in all patients who experienced abnormal and potentially life-threatening heartbeats. Results were reported in the study,…

Bardoxolone methyl, an investigational therapy developed by Reata Pharmaceuticals, was shown to significantly improve the exercise capacity of patients with pulmonary hypertension (PH) associated with sarcoidosis in a Phase 2 clinical trial. Bardoxolone is an experimental, oral molecule that promotes the resolution of inflammation by targeting an important mediator…

A project studying the possible link between sarcoidosis and lung microbes received a four-year, $2.7 million grant from the National Institutes of Health (NIH). The research will be conducted at the University of Illinois at Chicago and may help predict disease prognosis. Sarcoidosis is an inflammatory disorder that…

Genetic sequencing and the speed with which it can help diagnose a child’s disease — in addition to revealing the genes that cause at least half of the 7,000 rare diseases currently known — was the focus of a discussion by three top New York geneticists. The Feb. 28 conference,…

Infection from the bacteria Propionibacterium acnes is found frequently and at high rates in the lymph nodes of sarcoidosis patients and may contribute to the formation of granulomas, a small study suggests. These results also provide another piece of evidence linking P. acnes bacteria to sarcoidosis. The study, “Propionibacterium acnes-derived insoluble immune…

When it comes to rare diseases, one that definitely makes the list is spinal muscular atrophy with respiratory distress — SMARD,  for short. Hunter Pageau, a 12-year-old boy from North Haven, Connecticut, is one of only 80 people in the world known to have SMARD, a motor neuron disease…

Several mutations found in 37 genes were reported to be possible genetic risk factors for pediatric sarcoidosis, according to researchers. The report, “Whole exome sequencing in three families segregating a pediatric case of sarcoidosis,” was published in the journal…