News

Canada’s Quebec Province has agreed to provide public health insurance coverage of Actelion‘s pulmonary arterial hypertension therapy Uptravi (selexipag). The pan-Canadian Pharmaceutical Alliance (pCPA), a group that represents Canada’s provinces in trying to keep drug costs in line, played a key role in the price negotiations on Uptravi that…

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…

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…

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…