Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by signing up their patient communities and connecting with researchers. Eric Sid, MD, program officer for the Office of Rare Diseases Research (ORDR), said it is difficult to estimate how…
Maternal and fetal complications are frequent across pulmonary hypertension (PH) groups, with about a third of patients experiencing an uneventful pregnancy, a small single-center study shows. While PH due to left heart disease is often thought to carry a lower risk of pregnancy complications than pulmonary arterial…
Pulmonary hypertension (PH) has a profound impact on the identity and sexuality of the women who live with the disease, a new study reports. The study, “Sexual and Reproductive Health in Women with Pulmonary Hypertension: A Qualitative Study,” was published in Archives of Sexual Behavior. The impact…
Greater stiffness in the pulmonary arteries, those supplying blood from the heart to the lungs, and problems with the workings of the heart’s right ventricle were evident in obese adults with no known cardiovascular disorder, indicating a possible risk of pulmonary hypertension (PH), according to a recent study. “This study…
Horizon Therapeutics has launched its #RAREis Representation program aimed at increasing diversity, equity, and inclusion among patients with rare diseases. There are about 400 million people worldwide living with a rare disease; for many of them, access to diagnosis, care, and treatments can be challenging. Accessing better care depends on…
Depression and anxiety are common in people with pulmonary hypertension (PH), especially for those living in Asia, a review of 24 studies involving 2,161 participants has found. Researchers noted that “increased awareness amongst physicians regarding the vulnerability of PH patients to psychiatric conditions is key,” and that the “findings…
Ferrer has acquired exclusive rights to commercialize Tyvaso (inhaled treprostinil) for the treatment of pulmonary hypertension associated with interstitial lung disease (PH-ILD) outside North America, Japan, China, and Israel. The therapy, developed by United Therapeutics, is currently approved for that indication only in the U.S.,…
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…
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