News

Sarcoidosis patients can be divided into women over age 40 with skin and eye lesions, and men under 40 with lung involvement, according to a large survey conducted in Japan. The study, titled “Nationwide survey on the organ-specific prevalence and its interaction with sarcoidosis in Japan,”…

A recent study shows that while lung function was unaffected, patients with fibrotic sarcoidosis report increased respiratory symptoms and decreased quality of life after short-term exposure to air pollution. This small cohort study, titled “Short-Term Particulate Air Pollution Exposure is Associated with Increased Severity of Respiratory and…

A new case report from India describes the occurrence of both sarcoidosis and tuberculosis (TB) in a patient with severe pulmonary arterial hypertension (PAH), and highlights the importance of early treatment in these rare cases. The study, “Coexistence of Sarcoidosis and Tuberculosis Presenting with Severe…

The Foundation for Sarcoidosis Research recently launched a Patient Ambassador Program called “Ask the Ambassadors!” to help people with sarcoidosis clarify questions they may have about life with the condition, treatment options, and other topics. The foundation believes that the causes of sarcoidosis, and ultimately a cure, will…

As President Trump signed the recently passed Right to Try legislation into law in a White House ceremony, Jordan McLinn of Indianapolis tried twice to embrace him. The third time, 9-year-old Jordan finally got the hug he wanted — as well as a kiss on the forehead. The video of…

Levels of endocan, an indicator of inflammation, can be used as a predictive biomarker for the involvement of the cardiovascular system and the development of atherosclerosis in patients with sarcoidosis, a new study shows. The study titled, “Endocan Levels and Endothelial Dysfunction in Patients With Sarcoidosis,” was published…

Finding treatments and potential cures for rare diseases is crucial, but so is the quality of patients’ lives — a rather nebulous term that means different things to different people. “Recently, there’s been much more of a focus on Quality of Life (QoL) issues, real-world evidence and patient-reported outcomes,” said…

Mindfulness exercises can help decrease the physical and psychological symptoms of sarcoidosis and improve well-being and motivation in patients and caregivers, a small study found. Sarcoidosis patients, including some who have achieved clinical remission, can experience psychosocial consequences of the disease including depression, anxiety, and feelings of isolation. Coping strategies and methods…

The National Organization for Rare Disorders (NORD) will celebrate the 35th anniversary of both the 1983 Orphan Drug Act and NORD’s founding at a dinner tonight in Washington, D.C. The 2018 Rare Impact Awards, to be held at the Andrew W. Mellon Auditorium, will be webcast via Facebook for those…

The European Union isn’t doing enough to protect the 30 million or so people with rare diseases who live in its 28 member countries, officials meeting last week in Vienna said. More than 900 people from 58 nations attended the 9th European Conference on Rare Diseases & Orphan Drugs (ECRD),…