News

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…

Subcutaneous Remodulin (treprostinil), marketed by United Therapeutics, is to be safe and effective for at least 12 months in patients with congenital heart disease-related pulmonary arterial hypertension (CTD-PAH), an observational study found. The study, “Subcutaneous treprostinil in congenital heart disease-related pulmonary arterial hypertension,” was published in the…

Development of pulmonary hypertension (PH) in cystic fibrosis (CF) patients compromises lung function and blood-gas parameters, but does not significantly worsen survival, an analysis suggests. The study, “Prognostic significance of pulmonary hypertension in patients with cystic fibrosis: A systematic review and meta-analysis,” was published in the journal …

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…

The presence of systemic autoimmune rheumatic diseases (ARDs) — a comorbidity that can range from systemic sclerosis to Sjögren’s syndrome — does not impact survival rates among adults with pulmonary arterial hypertension (PAH) who undergo a lung transplant, a study says. The report, “Survival of…

Treatment with Tracleer (bosentan) is effective in patients with pulmonary arterial hypertension (PAH), a new review study and analysis of data from clinical trials shows. The research, “Bosentan Therapy for Pulmonary Arterial Hypertension and Chronic Thromboembolic Pulmonary Hypertension: A Systemic Review and…

Opsumit (macitentan) failed to improve the cardiac function of people with pulmonary hypertension stemming from a heart problem, a Phase 2 clinical trial shows. The PH patients who took it were also at increased risk of fluid retention, researchers said. The therapy’s developer, Actelion, reported the results in the European…

Reata Pharmaceuticals announced that pulmonary arterial hypertension (PAH) patients treated with bardoxolone methyl showed significant improvements in kidney function that were sustained for two years without adverse outcomes. The results from the long-term follow-up of the Phase 2 LARIAT study (NCT02036970) showing a two-year improvement in kidney…

Low levels of oxygen in the blood of people with idiopathic or heritable pulmonary arterial hypertension (IPAH or HPAH) are associated with secondary diseases and a poor patient outlook, a study shows. IPAH and HPAH patients can have hypoxemia, or low levels of oxygen in the blood, either at rest…

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…

The NYU Langone Transplant Institute recently launched a new lung transplant program to offer lung disease patients in the New York City area an array of comprehensive services. The lung transplant program is the third of its kind in the New York area. It offers patients with…

Thirty percent of pulmonary arterial hypertension (PAH) patients experience depression or anxiety, according to a study that looked at patients’ psychological disorders, feelings of stress, and social support. The study, “Quality of life and psychological symptoms in patients with pulmonary hypertension,” was published in the journal Heart…