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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),…

A newly established registry for patients with sarcoidosis associated with pulmonary hypertension sheds light on characteristics and treatment patterns that can be used for future randomized clinical trials, according to researchers. Their study, “Clinical features of sarcoidosis associated pulmonary hypertension: Results of a multi-national registry,” was…

Sarcoidosis patients given double lung transplants, especially at younger ages, show superior survival rates to those with other serious lung diseases, researchers report, suggesting these considerations guide the procedure. Survival was also better in sarcoidosis patients of European descent compared to African-Americans, though more blacks were in the patient group…

In rare cases of sarcoidosis, patients may have high blood calcium levels (hypercalcemia), scarring on the scalp, and kidney failure, according to a new report. The case report, titled “Symptomatic hypercalcemia and scarring alopecia as presenting features of sarcoidosis,” was published in the journal Baylor University…

A small study assessing antibody levels in sarcoidosis patients at the time of their diagnosis found that elevated levels did not predict a more severe disease progression. But French researchers found that higher levels of the ACE enzyme and the involvement of areas of the body outside the lungs were associated…