News

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…

At least 800 people representing some 45 countries are soon expected to gather in Austria’s capital city, Vienna, for ECRD 2018, the 9th European Conference on Rare Diseases and Orphan Products. The May 10-12 meeting is sponsored by Eurordis, the Paris-based group that defines itself as a “patient-driven alliance”…

Patients with cardiac sarcoidosis have similar post-heart transplant features and survival rates as patients without the disease, a new study found. The data indicates that heart transplant is a viable strategy in patients with cardiac sarcoidosis. Although heart transplants due to non-ischemic cardiomyopathy (NICM; when the heart’s muscle —…

Exposure to chemical substances used in leather tanning may have been the cause of a rare case of subcutaneous (under-the-skin) sarcoidosis around a man’s left eye and mouth, a recent case report suggests. The report, “Occupational exposure as a presumable cause of subcutaneous sarcoidosis in a tannery…

The Foundation for Sarcoidosis Research (FSR) has invested $1 million in its new Clinical and Research Fellowship Program. It also gave travel awards to the first authors of the top four abstracts submitted for presentation at the annual conference of the Americas Association of Sarcoidosis and Other Granulomatous Disorders…