I think people in the pulmonary hypertension (PH) community tend to apologize too much. We are so good at it, and we often say we are sorry when it isn’t necessary or even appropriate. It’s a topic we have fumbled with often in the Pulmonary Hypertension News Forums. A…

Many people with chronic thromboembolic pulmonary hypertension or CTEPH have a particular anatomical variation called May-Thurner anatomy, which may increase the risk of developing this rare disease type, according to researchers. A new study found this anomaly is very common in individuals with CTEPH, with nearly 30% of patients…

Rare mutations in the ATP13A3 gene caused a severe inherited form of childhood-onset pulmonary arterial hypertension (PAH), a case study of three families showed. These findings demonstrate the “growing importance” of genetic testing in patients with childhood-onset PAH, the scientists said, noting that the genetic basis of the disease…

Football and science seem to be disparate fields of play at first glance, but the nonprofit Uplifting Athletes is finding common ground by leveraging the popularity of college gridiron games to fund research for rare diseases. Its nearly two dozen chapters — representing college football teams across the nation…

COVID-19 tends not to cause serious disease or death in children with pulmonary hypertension (PH), but its long-term consequences remain unknown, according to a study done at a center in Texas. The study, “Outcomes of COVID-19 Infection in pediatric pulmonary hypertension: a single-center experience,” was published in the…

Parents sometimes joke that they wish their child came with an instruction manual. If there were a manual for kids, I would’ve had to toss out my son Cullen’s manual when he was 8. That was the year he was diagnosed with pulmonary hypertension (PH). The PH diagnosis made…

Health-related quality of life does not change substantially over time among people with pulmonary arterial hypertension (PAH) — though PAH patients who experience more substantial disease progression tend to report worse quality of life scores — a small study done at a hospital in France has found. These findings…