News

Retrophin and the U.S. subsidiary of Britain’s Horizon Pharma will each donate $3 million over a six-year period to the Rare Disease Institute (RDI) at Children’s National Health System in Washington, D.C., helping it to strengthen care available and expand as a “center of excellence” for rare…

A small study of a group of patients in Canada who were showing the first signs of sarcoidosis suggests that isolated cardiac sarcoidosis, which refers to cardiac involvement without the disease clinically apparent elsewhere, may be rarer than previously reported. The study, “How common is isolated cardiac sarcoidosis? Extra-cardiac and…

In recognition of Rare Disease Day 2018, Bionews Services — which publishes this website — will attend and report on three relevant conferences in the U.S. dealing with policies and programs of importance to patients and their families. The three are among 50 events in 32 states…

A rock-painting contest in Las Vegas. A fashion show in New York. A 7,000-meter race around the Washington Monument that’ll coincide with a similar #Racefor7 event in Bengaluru and Mumbai, India. From Athens to Atlanta, from San Diego to Sydney, people across the globe will mark World Rare Disease…

A recent study has reported on a multiple sclerosis (MS) patient who developed pulmonary sarcoidosis after receiving the relapsing-remitting MS (RRMS) therapy daclizumab. The report “Pulmonary Sarcoidosis in a patient with Multiple Sclerosis on daclizumab monotherapy,” was published in Multiple Sclerosis and Related Disorders. Daclizumab is a…

Blood levels of a soluble protein can be used as a diagnostic test to confirm sarcoidosis in cases of acute uveitis, a test that is superior to the standard biomarker used, called angiotensin-converting enzyme (ACE). The results were reported in “Diagnostic…

David Curtis Glebe, a retired 64-year-old public prosecutor now living in Millsboro, Delaware, knows he’s lucky to be alive. In mid-2013, while in Arizona, Glebe was diagnosed with pancreatic neuroendocrine cancer (PNET) — the same disease that killed Apple’s founder and CEO Steve Jobs. After three years of progress…

Respiratory disease expert Jesse Román, MD, is the new CEO of Philadelphia’s Jane and Leonard Korman Respiratory Institute. Románhas published about 115 peer-reviewed articles in scientific journals and 20 manuscripts — primarily on sarcoidosis, interstitial lung disease and pulmonary fibrosis. Román’s most recent position was chairman of the Department of…

The number of hospitalizations of sarcoidosis’ patients in the U.S. has increased over the past decade with more than one-third showing heart-related disorders, according to a study published in the Journal of the American Heart Association.  Moreover, sarcoidosis hospitalizations are more frequent in urban as compared with rural hospitals, blacks…

The first patient was recently enrolled in a Phase 4 trial to further evaluate the effectiveness of H.P. Acthar Gel as a therapy for pulmonary sarcoidosis, according to Mallinckrodt. Acthar Gel (repository corticotropin injection) is a U.S. Food and Drug Administration (FDA)-approved therapy for 19 different indications, including respiratory symptomatic…