Regulatory authorities in both the U.S. and the European Union have granted orphan drug status to deupirfenidone (LYT-100), an oral therapy Puretech Health is developing to treat idiopathic pulmonary fibrosis (IPF). This designation aims to provide extra economic incentives to companies that invest in developing medications for rare…
In preparing for emergencies, we’re using technology to our advantage
What do blue lobsters, green eyes, and idiopathic pulmonary fibrosis (IPF) have in common? At first glance, they may seem unrelated, but each represents something rare and extraordinary. Imagine a game board with the overarching theme of rarity, featuring categories such as unusual sea creatures, unique physical traits, and…
Mutations in the ACVRL1 gene may play a role in the development of idiopathic pulmonary fibrosis (IPF), and targeting the gene — until now, little noted, according to researchers — could potentially lead to new treatments for the respiratory disease, a study suggests. Additionally, according to the scientists, the study…
What do we want? A therapy and a cure! When do we want it? Now! Call-and-response is a tactic often used in protests. Raising many voices together to deliver the same message is a powerful force. Together as a community, we can deliver that message. The Pulmonary Fibrosis Foundation‘s (PFF)…
Treatment with Esbriet (pirfenidone) reduces the risk of irregular heartbeat by nearly 90% in adults with idiopathic pulmonary fibrosis (IPF), according to a new study. Use of the approved IPF drug also eased the worsening of atrial arrhythmias — irregular heartbeats originating in the upper chambers of the heart —…
How was Stonehenge constructed some 5,500 years ago? How were the stones moved, and who moved them? Why were the monolithic statues erected on Easter Island? Do questions like these weigh on you? I enjoy a good mystery, and my journey with idiopathic pulmonary fibrosis (IPF) has all the…
New Phase 2a clinical trial data suggest that treatment with GRI-0621, an experimental oral therapy from GRI Bio, altered the activity of genes linked to inflammation and lung scarring (fibrosis) in adults with idiopathic pulmonary fibrosis (IPF). The therapy was also associated with increased activity of genes involved…
Note: This column describes the author’s own experiences with Protonix (pantoprazole), Prograf (tacrolimus), Rapamune (sirolimus), and Forteo (teriparatide injection). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Pulmonary fibrosis patients, no matter where they are in their journey, require…
Years before my husband, Donnie, first began having breathing troubles, he suffered from stiff, achy muscles and exhaustion. Each night, he’d come home from work exhausted, sore, and discouraged by the pain his body was experiencing. At first, he attributed his discomfort to residual soreness from working in a high-paced…
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Recommended Posts
- In preparing for emergencies, we’re using technology to our advantage
- US, EU regulators name deupirfenidone an orphan drug for treating IPF
- This month is our time to raise awareness about rare diseases
- Targeting ‘overlooked’ gene could lead to new treatments for IPF: Study
- Partner with PFF through advocacy and education to benefit PF community
