“Patient journeys” is an initiative designed to help patients and clinicians improve care for rare lung diseases, including pulmonary hypertension (PH). The project, announced in a press release from the European Reference Network on Rare Respiratory Diseases (ERN-LUNG), presents testimonies showing the clinical history and needs of patients through…
The two COVID-19 vaccines that recently received emergency approval from the U.S. and other worldwide regulatory agencies are expected to pose little risk to the rare disease community, including to patients with compromised immune systems or those participating in gene therapy studies. That was the message of a recent…
A total of approximately 5.8 new cases per one million inhabitants was found to be the most accurate value for the worldwide incidence of pulmonary arterial hypertension (PAH), according to a review study. That incidence value — the rate of occurrence of new cases of a disease — ranged…
Soluble ST2 (sST2) protein could be an additional non-invasive biomarker for monitoring patients with chronic thromboembolic pulmonary hypertension (CTEPH) undergoing interventional treatment with balloon pulmonary angioplasty (BPA), a study suggests. The study, “Soluble ST2 as a Biomarker for Early Complications in Patients with Chronic Thromboembolic Pulmonary Hypertension Treated…
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…
United Therapeutics is now among the leading sponsors of the Pulmonary Fibrosis Foundation (PFF) Registry, a research data resource for pulmonary fibrosis (PF) that is expanding to include pulmonary hypertension (PH) associated with PF, the foundation announced. Pulmonary hypertension that develops during the course of PF (characterized by scarring…
Tenax Therapeutics has acquired PH Precision Med (PHPM), a private biotech focused on developing imatinib as a treatment for pulmonary arterial hypertension (PAH). “The acquisition of PHPM immediately expands Tenax’s pipeline to include a second de-risked Phase 3 ready candidate with the potential to be the first…
Nebulizer treatment with Tyvaso (inhaled treprostinil) can improve exercise capacity in people with pulmonary hypertension associated with interstitial lung disease (PH-ILD), a study reports. The study, “Inhaled Treprostinil in Pulmonary Hypertension Due to Interstitial Lung Disease,” was published in The New England Journal of Medicine. ILD…
The HealthWell Foundation has opened a fund to help people with pulmonary hypertension (PH) in the U.S. who are on Medicare with covering their healthcare costs. The fund will offer awards of up to $10,000 over a one-year grant…
The prolargin protein may serve as a biomarker for pulmonary arterial hypertension (PAH), allowing for earlier diagnosis and differentiating among different types of pulmonary hypertension (PH), according to a recent study. The study, “Plasma proteoglycan prolargin in diagnosis and differentiation of pulmonary arterial hypertension,” was…
The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for…
A gene called DNMT3B was found for the first time to be a mediator of blood vessel wall growth, and has been implicated in the development of pulmonary hypertension (PH) in a rat study. This gene, which regulates inflammatory pathways…
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