Global Genes has partnered with the Rare Disease Diversity Coalition (RDDC) to advance health equity for rare disease patients and caregivers in underrepresented communities of color. “For rare disease patients, there are many challenges — and for people of color with a rare disease, these challenges are compounded…

Due to problems at a third-party facility, the U.S. Food and Drug Administration (FDA) has decided to not approve Tyvaso DPI, a dry powder inhaled formulation of treprostinil, at this time. According to United Therapeutics, the medication’s developer, the issue is expected to be dealt with soon. The company anticipates…

Oxygen therapy may help relieve lung pressure in patients with chronic thromboembolic pulmonary hypertension (CTEPH) who are about to undergo balloon pulmonary angioplasty, a procedure in which balloons are used to open blood vessels that have been chronically narrowed or blocked, according to a new study. Researchers found a decrease…

People with pulmonary hypertension (PH) who start treatment with opioids to manage pain after undergoing surgery are at high risk of continuing to take these addictive medications for longer than required, new research suggests. Indeed, hypertension was one of eight specifically identified “top risk factors” for “new persistent post-surgical…

As I prepare for a small diagnostic procedure this week, I’m noticing that my anxiety has skyrocketed. This is happening for two reasons. The first is that I have a full memory bank of physically uncomfortable and painful procedures that have made me quite sensitive. My years with illness have…

Living with pulmonary hypertension (PH) is a constant challenge. If I’m not educating myself, I’m educating my family and friends, and at times, even my medical team. Yes, the members of my medical team are experts in medicine, but I am the expert of my own body. Recently, I…

The U.S. Food and Drug Administration (FDA) has cleared Tenax Therapeutics to begin clinical testing of its new oral formulation of imatinib in people with pulmonary arterial hypertension (PAH). The company is planning to conduct a small pharmacological study this year — and then launch a Phase 3…

I’ve always considered myself an “on” person, somebody who says yes to the boss or co-worker, friend or relative, thing or event asking for my attention and energy. I’m like a faucet running all the time, never slowing down to make time for myself. Being on all the…