The current scoring system used to assess the urgency of lung transplants, called LAS (lung allocation score), fails to predict the risk of death in people with sarcoidosis, a single center study suggests. The study “Mortality for sarcoidosis patients on the transplant wait list in the…
Next month’s annual conference of the National Organization for Rare Disorders (NORD) in Washington, D.C., couldn’t come at a better time, says Marshall Summar, MD, chairman of NORD’s board of directors. “The pace of discovery in rare diseases has gone from brisk to hypersonic,” Summar told Bionews Services, publisher…
Sarcoidosis patients and their partners experience a lower quality of life because of nonspecific disease-associated symptoms compared to healthy people, a new study demonstrated. The study, titled “Quality of Life of Couples Living with Sarcoidosis,” was published in the…
Rare diseases deeply affect not only the children who experience them, but also their healthy brothers and sisters, as their parents can attest. Two entries in November’s “Disorder: The Rare Disease Film Festival” will focus on what siblings go through, according to the San Francisco festival’s co-founder,…
Developing gene therapies for rare diseases is one thing. Creating gene-edited “designer babies” is quite another. German legal expert Timo Minssen outlined the potentially explosive ethical landmines surrounding such issues during a recent talk at the New York Genome Center. Minssen directs the Center for Advanced Studies in…
People with hepatitis C who develop sarcoidosis may be safely treated with adalimumab, marketed by Abbvie as Humira, a case report suggests. The case was described in a study, “Sarcoidosis with concomitant hepatitis C infection treated successfully with adalimumab,” which was published in the Journal…
Imagine living your whole life with a painful disease so rare that only 25 others worldwide have what you have. And that you’re one of just six such people who’ve made it to adulthood. Neena Nizar doesn’t have to imagine. The 41-year-old English professor at Metro Community College in Elkhorn,…
An educational conference for people with sarcoidosis and those close to them will be held at the University of Cincinnati this Saturday, featuring doctors with expertise in this disease, presentations, and a question-and-answer session. The Aug. 24 event at the Ohio university’s Kresge Auditorium runs from 10:00 a.m. to…
A new statistical analysis of Finland’s nationwide cardiac sarcoidosis (CS) registry found that sudden cardiac death plays a significant role in the outcome of CS patients, affirming the importance of risk assessment in this patient population. The study, “Sudden death in…
Using Jakafi (ruxolitinib) to treat a woman with polycythemia vera (PV; a blood cancer) led to complete resolution of her cutaneous sarcoidosis, and to mild reduction of her lung nodules, according to a case report. The findings suggest a new therapeutic strategy, especially for patients with cutaneous sarcoidosis,…
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