Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders gave a few tips for those looking to begin the complex process in its Feb. 20 webinar. William Whitman…
News
The National Institute for Health and Care Excellence (NICE) in the U.K. is currently in the process of evaluating Vertex Pharmaceuticals’ triple combination therapy — known as Trikafta in the United States — for the treatment of cystic fibrosis (CF). The institute expects to deliver its…
Two years ago, Israel became only the fourth country in the world — after the U.S., Germany, and Belgium — to agree to underwrite the cost of Vertex Pharmaceuticals’ three available therapies for cystic fibrosis: Kalydeco (ivacaftor), Orkambi (ivacaftor/lumacaftor), and Symdeko (tezacaftor/ivacaftor combo). But that’s not…
To put it in yoga-speak, instant karma greeted the co-founders of CF Yogi — Myra Giaffoglione of Glenwood, Iowa, and Elaine Malik of Seattle — when they spoke for the first time in the spring of 2018. Malik, 40, and Giaffoglione’s two kids, 7-year-old Jack…
The U.S. Food and Drug Administration (FDA) has granted its orphan drug designation to ARV-1801 (sodium fusidate tablets), a treatment developed by Arrevus for patients with cystic fibrosis (CF). CF patients frequently develop lung infections due to the accumulation of thick mucus in their lungs, creating…
An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…
More than 70% of home nebulizers used by children with cystic fibrosis (CF) are contaminated with microorganisms, posing a serious potential health risk to patients and underscoring a significant need for educational programs focused on nebulizer maintenance and hygiene, a research study found. The study also found a…
The Cystic Fibrosis Foundation has reached an agreement with Synspira Therapeutics to support the further development of SNSP003, an enzyme replacement therapy (ERT) designed to treat malabsorption syndromes, including those affecting patients with cystic fibrosis (CF). Malabsorption syndromes are a group of disorders that develop when there…
A new non-invasive tool, called XV technology, allows professionals to visualize airflow in a living lungs and could help in the diagnosis, monitoring, and treatment of cystic fibrosis (CF) and other respiratory lung diseases, scientists report. The technology was developed by researchers at Monash University, and has been patented by the…
Iron deficiency is common among adults with stable cystic fibrosis (CF) and is significantly associated with anemia, vitamin A deficiency, antacids use, and moderate to severe lung disease, a study shows. Prevalence rates of iron deficiency were found to vary widely due to poor agreement between…
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