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The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in Cleveland, Ohio. The event, which brings together the rare disease community, will take place at the InterContinental Cleveland Conference…
Children living in the same household with adults who work in mineral dust-releasing jobs may have an increased risk of developing sarcoidosis, according to a small study. The findings suggest that indirect exposure to potentially harmful minerals — and specifically, inhaled mineral particles — through co-habitation with adults working…
African Americans with advanced-stage pulmonary sarcoidosis who are taking Acthar Gel (repository corticotropin injection) may see their symptoms ease and be able to reduce the use of other medications, according to new findings. The findings were pulled from a new subgroup analysis of a real-world study that…
aTyr Pharma is launching a Phase 3 clinical trial to evaluate the safety and effectiveness of efzofitimod (ATYR1923) in people with pulmonary sarcoidosis. Expected to begin later this year, the primary goal of the study — dubbed EFZO-FIT — will be a reduction in therapeutic corticosteroids, which…
A rare occurrence of sarcoidosis in male breast tissue was observed in an American man, according to a recent case report. The report, “A Rare Case of Sarcoidosis Involving Male Breast Tissue,” was published in the Cureus Journal of Medical Science. Sarcoidosis is characterized by…
A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for her and her family to leave. The treacherous, 34-hour pilgrimage that ultimately brought the group of eight by car to temporary accommodations in neighboring Poland last month was physically and emotionally difficult,…
The blood levels of natural killer T-cells (NKT), a type of immune cell, are reduced significantly in sarcoidosis patients with subclinical signs of heart involvement relative to those without, a small study shows. Notably, low NKT cell levels were associated significantly with imaging markers of heart inflammation, suggesting that…
A recent technique for collecting lung tissue for analysis, called transbronchial lung cryobiopsy, is better than more conventional methods for a definitive sarcoidosis diagnosis, according to a German study. The study, “Diagnostic Yield of Transbronchial Lung Cryobiopsy Compared to Transbronchial Forceps Biopsy in Patients with Sarcoidosis in a…
The European Commission is expected to propose a new governing framework for health data next month, called the European Health Data Space (EHDS), with the aim of connecting national health systems to facilitate secure and efficient transfer of data across systems in different European nations. The move is expected to…
The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally friendly and added telehealth to its categories of rare disease policy issues in a nod to its increased use during the ongoing COVID-19 pandemic. NORD’s report card project began seven…
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