News

Nominations Open for 2022 Eurordis Black Pearl Awards

Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. The 12 award categories recognize individual advocates, policy makers, researchers, organizations, and companies who work to make a difference for the global rare disease community. The deadline for nominations is Sept. 10…

Fatty Liver Disease More Common Among People With PH

Non-alcoholic fatty liver disease (NAFLD) — an umbrella term for conditions caused by a buildup of fat in the liver — is about twice as common among people who have pulmonary hypertension (PH) than among those who do not, a review of almost 19,000 people has shown. The finding…

PH Not Common Disease, Population Study Finds, but Groups at Risk

The likelihood of developing pulmonary hypertension (PH) is low among people in southern Italy, suggests a study that draws from a random and large grouping of individuals with echocardiograms, done to determine disease prevalence. Independent predictors of PH include female sex and right ventricular enlargement, its scientists noted. The study,…

Moving From Tracleer to Letairis Seen as Safe for PAH Patients

People with stable pulmonary arterial hypertension (PAH) can safely switch from Tracleer (bosentan) to Letairis (ambrisentan) without compromising their heart function or general health status, a study from China reports. PAH patients in Hunan province may also benefit financially by moving from Tracleer to Letairis, as it…

Support Groups May Help Patients Better Manage Symptoms

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…

New IPAH Gene Variants Identified in Large Global Study

A study of rare gene variants has identified two new candidates — fibulin 2 (FBLN2) and platelet-derived growth factor D (PDGFD) — that increase risk for adult-onset idiopathic pulmonary arterial hypertension (IPAH). In-depth genetic analyses also predicted that about 15% of IPAH cases in children are caused by de…

Dosing Begins in Phase 1 Trial of Inhaled Imatinib

Dosing has begun in a clinical trial testing AER-901, Aerami Therapeutics‘ inhaled formulation of imatinib, which is being investigated as a potential treatment for pulmonary arterial hypertension (PAH). “We are pleased to announce that the dosing of subjects in our Phase 1 trial is ongoing and that we expect to…

CIT GAP Funds Invests in OxiWear Device for PH Patients

The Center for Innovative Technology (CIT) GAP Funds has invested in OxiWear and its ear-wearable device designed to continuously monitor blood oxygen levels in people with pulmonary hypertension (PH) and alert them when levels fall below safe thresholds. Oxiwear is expected to help patients get the help they…

EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…