News

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…

The Foundation for Sarcoidosis Research (FSR) is searching for volunteers to join its advocacy program, designed to support the sarcoidosis community in a number of ways, from raising awareness to coaching other advocates to providing one-on-one support to patients and caregivers. The program consists of three advocate roles:…

Sarcoidosis patients are invited to share their stories, fundraise, and attend a variety of events this April to celebrate Sarcoidosis Awareness Month. An estimated 1.2 million people across the globe live with sarcoidosis, an inflammatory disease with no known cure. Nearly 175,000 of these people are thought to…

Having an ultrasound of the neck may be useful for diagnosing certain cases of sarcoidosis — and for ruling out other similar conditions, a new study highlights. In fact, statistical models based on ultrasound measures used in the study were shown to accurately identify 90% of patients with and…

Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by signing up their patient communities and connecting with researchers. Eric Sid, MD, program officer for the Office of Rare Diseases Research (ORDR), said it is difficult to estimate how…

aTyr Pharma has received positive feedback from the U.S. Food and Drug Administration (FDA) in a meeting to discuss the regulatory development of its lead candidate, efzofitimod (ATYR1923), for the treatment of pulmonary sarcoidosis. After a review of data provided by aTyr, including results from a recently completed…