Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is green, and AIDS is red, for example — but what’s the significance of pink, green, blue, and purple lights side-by-side? These are the colors most often used to represent Rare Disease Day. This…
A six-month exercise training program can significantly improve physical and psychological well-being in patients with pulmonary hypertension (PH), according to results of a new trial. The study, “Long-Term Effect of an Exercise Training Program on Physical Functioning and Quality of Life in Pulmonary Hypertension: A Randomized Controlled Trial,”…
Despite having lower respiratory muscle strength, people with pulmonary arterial hypertension (PAH) can still use dry powder inhalers that require breath-actuated force to effectively deliver inhaled therapies, a study has found. The study, “Impact of human behavior on inspiratory flow profiles in patients with pulmonary arterial…
The Pulmonary Hypertension Association (PHA) has published a guide that aims to help people recently diagnosed with pulmonary hypertension (PH), as well as their family and caregivers, in better managing the chronic lung disease. The 60-page book, titled “Navigating Pulmonary Hypertension: A Guide for Newly Diagnosed Patients,” covers…
VivaLNK’s wireless device can now be used to capture changes in heart rate and electrical activity in people with pulmonary hypertension (PH) or other disorders during the six-minute walk test (6MWT), a routine exercise endurance test. This wearable electrocardiography (ECG) monitor allows for in-clinic and remote patient…
Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a young age, he also learned how to turn those trials into triumphs. At age 9, a stroke due to his disease left him paralyzed…
Top-line data from a Phase 1 clinical trial has found that treprostinil palmitil inhalation powder (TPIP) — a dry powder form of a treprostinil precursor that is being developed by Insmed for treating pulmonary arterial hypertension (PAH) — was safe and well-tolerated in healthy volunteers. Results also showed…
Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…
The U.S. Food and Drug Administration (FDA) has approved Alembic Pharmaceuticals’ injectable formulation of treprostinil, a generic version of Remodulin, to treat patients with pulmonary arterial hypertension (PAH), the company announced. Like the branded product, this generic version of United Therapeutics’ treprostinil will be available in multiple-dose vials…
Remunity, an innovative pump for Remodulin (treprostinil) to treat adults with pulmonary arterial hypertension (PAH), has launched commercial sales, according to the device’s developer, United Therapeutics. The Remunity system allows constant subcutaneous (under-the-skin) delivery of Remodulin (treprostinil). The therapy mimics the effects of prostacyclin, a natural vasodilator…
People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare disease patients overall give their healthcare experience a medium-low rating, of 2.5 on a scale of 1 to 5,…
People with pulmonary hypertension are less likely to be referred to exercise therapy if they are of lower socioeconomic status or perceive more barriers to accessing such therapy, a study shows. These findings highlight the need for increased education about the benefits of exercise for people with pulmonary hypertension,…
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