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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…
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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…
A joint effort between the startup Owkin and Actelion Pharmaceuticals, one of the Janssen companies, will seek to develop machine learning techniques that could improve how clinical trials are designed, and how the results are analyzed. While the two companies will work to create tools that can be applied…
When we hear the question “Did you pack everything but the kitchen sink?” my family’s answer has always leaned toward “Yes.” Since being diagnosed with pulmonary hypertension (PH) in 1999, my family has never been able to travel lightly. But the efforts we’ve put into traveling have always outweighed the…
A newly launched non-profit institute is seeking to advance research, and the development of new therapies, for people with rare diseases — a patient community with some of the largest therapeutic needs, but one that is often left behind. Named the Institute for Life Changing Medicines, the project was…
Last winter, columnist Jen Cueva was hospitalized due to COVID-19. Although she is recovering, some neurological symptoms still bother her.
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Becoming educated and informed about PH is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your PH journey.
There is no cure for PH yet, but there are treatments that can help manage the disease. Learn more about current therapeutic approaches here.
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