Bionews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper dive into what it’s like to live with a rare disease, including conversations about advocacy, mental health, survivor’s guilt, treatment of minority patients, and more. The Monday event, “A…
The composition of certain bacteria in the gut is significantly altered and associated with greater disease severity in people with pulmonary arterial hypertension (PAH), a pilot study shows. These findings add to prior research in PAH patients and animal studies linking the disease to an altered gut microbial community,…
A rare disease puts an economic burden on the patients, families, and caregivers that it affects, and will no doubt be an integral part of discussions on Rare Disease Day 2022, which brings international awareness about the more than 300 million people living with rare disorders. Part of that…
Team PHenomenal is inviting individuals with pulmonary hypertension to apply for $500 grants starting March 1 to help cover living expenses for those whose incomes have been affected by the COVID-19 pandemic. The Unmet Needs Patient Impact Fund can be used to pay for utility bills, home repairs,…
A bilateral or double lung transplant can rescue heart function in children and adolescents with pulmonary hypertension (PH), a U.S. single-center study reports. Specifically, a transplant was found to effectively normalize right ventricular (RV) function of the heart in PH patients up to age 21. Additionally, RV dysfunction prior to…
The nonprofit RARE-X is creating an easily-accessible, centralized data hub for all rare disease patient data that can help researchers answer questions about existing disorders, discover new ones, and work toward finding treatments. It was spun out of the work that Nicole Boice, founder and chief engagement officer of…
Hospital-based administrative data can be used to identify patients with pulmonary hypertension (PH) in medical records, according to a study done in Canada. These results, if validated, would pave the way for advances in the screening and treatment of PH, and help investigators improve epidemiological research into this rare…
Levels of fractional exhaled nitric oxide (FeNO) — a measure of how much nitric oxide a person exhales — may help diagnose pulmonary hypertension in patients with acute exacerbation of chronic obstructive pulmonary disease (COPD), a Chinese study suggests. Nitric oxide, called NO, is a vasodilator that helps…
It’s been nearly a year since the EveryLife Foundation for Rare Diseases released its expansive report finding the total economic burden of rare disorders in the U.S. to be nearly $1 trillion.
Rac1, an enzyme involved in blood pressure regulation, is overly active in pulmonary artery smooth muscle cells (PASMCs) — the cells that line the walls of pulmonary arteries — of people with pulmonary arterial hypertension (PAH) and a mouse model of pulmonary hypertension (PH), a study shows. Notably,…
Among people who have had a heart attack, those with pulmonary hypertension (PH) are at high risk of heart failure, according to a new study. The study, “Clinical impact of pulmonary hypertension on the outcomes of acute myocardial infarction patients with or without chronic obstructive pulmonary…
Metabolic differences affecting energy production were observed in endothelial cells — the cells that line blood vessels — from patients with pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH). These distinctions could underlie differences in disease mechanisms and necessary treatment approaches, according to a recent study.
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