Patients, Supporters Worldwide Recognizing Rare Disease Day 2020
An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening ... Read more
Updates
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Majority of Home Nebulizers Used by CF Children Contaminated with Microorganisms, Leading to Exacerbated Symptoms, Study Finds
More than 70% of home nebulizers used by children with cystic fibrosis (CF) are contaminated with microorganisms, posing a serious potential health risk to ... Read more -
Important Breaking News: I Am Not You
I’m going to talk about something other than sickness for a second. But stay with me, because I’m coming back to that, too. By ... Read more -
Synspira Therapeutics, CF Foundation Agree to Support Development of SNSP003 for Malabsorption Syndromes
The Cystic Fibrosis Foundation has reached an agreement with Synspira Therapeutics to support the further development of SNSP003, an enzyme replacement therapy (ERT) designed ... Read more -
Trust the Process: Your Hard Work Will Be Worth It in the End
I did not trust the process. I was impatient. A common theme with technological advancements is the expectation of instantaneous results. How many times ... Read more
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Noninvasive XV Technology May Lead to Faster CF Diagnosis and Better Treatment
A new non-invasive tool, called XV technology, allows professionals to visualize airflow in a ... -
Iron Deficiency Common Among CF Patients and Requires Routine Screening and Guidelines, Study Suggests
Iron deficiency is common among adults with stable cystic fibrosis (CF) and is significantly ... -
Presence of Heme B in Sputum Linked to Worse Lung Function in CF Patients, Study Shows
The presence of heme B — a component of red blood cells — in ... -
When Comparing Yourself to Others Makes You the Worst
I compare myself to other people. I shouldn’t, but I do. Sometimes, other people ... -
FDA Efforts to Bring Patients into Treatment Decisions Focus of NORD Webinar
The U.S. Food and Drug Administration (FDA), a vast government bureaucracy, employs about 17,500 ... -
It’s Time to Live Slowly
I haven’t tasted much energy over the past month. Thanks to steroid withdrawal, I ...
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