News

New Report Identifies Key Features in Systemic Sclerosis

Systemic sclerosis (SSc) is a disease that affects multiple organs, with the heart being frequently affected and correlating with a poor outcome for the patient. Different heart structures can be affected leading to pericardial disease, arrhythmias, conduction system abnormalities, direct myocardial disease such as pulmonary arterial hypertension, myositis, cardiac failure,…

TOMORROW: Webinar on Diagnosis and Management of Scleroderma Organized by Johns Hopkins and Scleroderma Research Foundation

Dr. Francisco Boin of the Scleroderma Center at The Johns Hopkins University School of Medicine is organizing a live and free webinar about scleroderma, a rare autoimmune disease, taking place tomorrow, August 21, at 1:00 p.m. EDT. The center is one of the largest scleroderma specialty clinics in the world and is…

Novel Nitric Oxide Delivery System May Someday Improve PH Treatments

GeNo LLC, a pharmaceutical company developing a line of innovative nitric oxide drug products, is currently testing next-generation inhaled nitric oxide (NO) drug delivery systems for use in both hospital and outpatient settings that could come to impact treatments for those with pulmonary hypertension. Nitric oxide is a naturally…

New Pediatric PAH Goals For Treatment Could Improve Patient Outcomes

A team of researchers from the University Medical Center Groningen in Holland, has identified three baseline variables that can become treatment goals in children suffering with pulmonary arterial hypertension (PAH). PAH is rare in infants, however, it is a severe condition that rapidly deteriorates if left untreated.

Raising Pulmonary Hypertension Awareness Through Art

Funding and awards from disease advocacy groups are usually given to scientists or clinicians and earmarked for research on new therapies and treatment options. While the Pulmonary Hypertension Association (PHA) is certainly well-known for funding research into PH, the organization is also passionate about empowering…

New Clues From Heart Imaging Give Researchers Insight Into PH

A team of researchers from the Imperial College London, UK, has preformed a three-dimensional speckle tracking (3D-ST) study and found that patients who have pulmonary hypertension (PH) are found to suffer from reduced right ventricular (RV) strain and notably more dyssynchronous ventricles compared to healthy individuals. 3D-ST is an…

Riociguat Provides Hope for Difficult-to-Treat PAH Patients

Some of the most difficult-to-treat patients with pulmonary hypertension are those with chronic thromboembolic pulmonary hypertension (CTEPH). These patients are in the most severe category of pulmonary hypertension: World Health Organization (WHO) Group 4. CTEPH patients have curative potential if they have no resectable lesions or contraindications…


A Conversation With Rare Disease Advocates