News

The healthcare costs of Americans with pulmonary arterial hypertension (PAH) are about the same before and after treatment starts, mainly because high treatment costs offset fewer hospitalizations, a study shows. The research, “Treatment Patterns and Associated Health Care Costs Before and After Treatment Initiation Among Pulmonary Arterial Hypertension…

An Ochsner Health System facility in New Orleans has received Pulmonary Hypertension Association  care center accreditation. The association accredits care centers that can assure patients receive top PH diagnosis and treatment. Ochsner’s PH program is located at the John Ochsner Heart and Vascular Institute. It is one of only two accredited…

Family and friends caring for people with rare diseases face emotional, financial, physical, and social burnout, partly because outside sources of support are limited, the first-of-its-kind U.S. survey shows. Global Genes and the National Alliance for Caregiving released the findings, which Greenwald & Associates conducted. It covered 1,406 family members caring…

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…

The National Institutes of Health (NIH) awarded a $2.8 million Fast Track Small Business Innovation Research (SBIR) grant to PhaseBio Pharmaceuticals to advance the clinical development of PB1046, the first sustained-release analogue of the natural vasoactive intestinal peptide (VIP), in patients with pulmonary arterial hypertension (PAH). In…

Many people with chronic kidney disease also have pulmonary hypertension, a condition that increases their risk of heart problems and death, a review of 16 studies found. Doctors refer to health problems that can damage the heart muscle as cardiovascular events. They include a heart attack, an irregular heartbeat, or a…

A new cardiac surgical procedure to treat mitral valve disease, which is minimally invasive, does not require open-heart surgery, and offers faster recovery, is being tested in an upcoming clinical trial.  Mitral valve disease occurs when the heart’s mitral valve — which has…

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…