Author Archives: Patricia Inacio, PhD

A six-month at-home rehabilitation program can help improve respiratory muscle strength and physical endurance, while promoting better quality of life, in people with pulmonary arterial hypertension (PAH) That finding from a small clinical trial revealed benefits extending to six months after the end of the program, and suggests this…

PulmoSIM Therapeutics has joined with scientists at National Jewish Health hospital and Brown University to advance PT001, its investigational and potentially disease-modifying therapy for pulmonary arterial hypertension (PAH), into clinical trials. The partnership follows PT001 being designated an orphan drug by the U.S. Food and Drug Administration (FDA). Orphan drug status…

U.S. veterans infected with the human immunodeficiency virus (HIV) — the virus that causes AIDS — are at higher risk of pulmonary hypertension (PH), according to a large study in this population. “HIV infection had a direct effect on incident pulmonary hypertension among US veterans,” including those with no history…

Joining support groups — meeting people with common experiences and concerns who can provide emotional reassurance — for pulmonary hypertension (PH) helped patients manage symptoms, stick to medicines, and better understand their disease, a study reports. Participation in a support group, however, had no impact on the general quality…

Despite a high-risk of serious complications, 10 women with moderate to severe pulmonary arterial hypertension (PAH) had a successful pregnancy and delivery, according to a single center study. The patients were managed with prostacyclin therapy in addition to PAH-specific treatments during pregnancy and specialized care. Most transitioned to oral…

Treatment with a single medication (monotherapy) may be sufficient to help manage people with “atypical” pulmonary arterial hypertension (PAH), according to an analysis from four clinical centers in Germany. One-year survival of adults diagnosed with “atypical” PAH — those older than 65 and with multiple risk factors for heart…

Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in the week’s pre-events. The top 50 point-earners will be eligible to win $1,000 to $5,000in  grants, totaling up…

Medical care for patients with pulmonary hypertension (PH) was affected during the first wave of the COVID-19 pandemic, with some patients reporting worsening health and difficulties in accessing expert care, a worldwide survey shows. The results were published in the Orphanet Journal of Rare Diseases, in the…

More than half of the people with rare diseases and their caregivers, asked in a survey, were undecided or less than willing to be vaccinated for COVID-19 if a vaccine was approved under emergency use authorization instead of the routine process, the EveryLife Foundation for Rare Disease reports. These findings…

Pulmonary hypertension (PH) increases the likelihood of a prolonged hospitalization following an acute ischemic stroke, or a stroke due to a blocked vessel carrying blood to a part of the brain, according to a large U.S. database study. Men with PH and such a stroke are also 31% more…

The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through training and education. For a second year, the #RAREis Scholarship Fund — supported by Horizon Therapeutics – will award 35 one-time scholarships, each…

Matt J. Granato is the newly named president and CEO of the Pulmonary Hypertension Association (PHA), the nonprofit group announced. Granato, who has more than 20 years of experience working in nonprofits and healthcare associations, will assume this office and its duties on Jan. 4. He is the third…