Cystic Fibrosis Weekly Update

Contents:

Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds

Mar 06, 2020 07:30 am | Patricia Inacio, PhD

The number of treatments for children with rare diseases has grown over the past decade, according to a new study. However, despite the increase, nearly 7,000 rare diseases are still lacking treatment. And federal incentives to boost treatment development for these rare diseases have primarily focused not on creating new therapeutics, but rather on expanding the […]
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Welcome to ‘Valiant Voice,’ a New Column About Life with CF

Mar 05, 2020 09:00 am | Lara Govendo

As a new columnist for Cystic Fibrosis News Today, I am honored to join a team of radically talented writers! My name is Lara, and most people call me “LAR-ah.” Many mistakenly call me Laura. The first syllable rhymes with car. Pronouncing my name correctly ranks you highly in my book! Diagnosed with cystic fibrosis […]
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Reflecting on the Passage of Time

Mar 04, 2020 03:00 pm | Ella Balasa

Last week led me to reflect on how things change with time. Looking back on the obstacles I have overcome and the stepping stones navigated help me to appreciate the present. Last Wednesday I drove home from a checkup at Duke University in Durham, North Carolina. My lung function was stable. I have been on […]
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