Those Who Care for Rare Disease Patients Face Burnout, First US Survey Shows
Mar 02, 2018 07:30 am | Patricia Inacio, PhD
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 for adults or children with a rare disease. […]
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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 programs in Louisiana, Mississippi and Alabama. The institute is […]
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 for adults or children with a rare disease. […]
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 disease patients. “We’re really proud of both these companies […]
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 the first stage, the grant will support an ongoing […]
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 blood clot in the heart […]
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 two flaps that open and close to allow blood to flow — cannot […]
