Exploring A Lung Disease So Rare There Are Only 7 Diagnoses: NEK10 Case Study
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Exploring A Lung Disease So Rare There Are Only 7 Diagnoses: NEK10 Case Study

When the 31-year-old woman showed up to Massachusetts General Hospital with a nasty respiratory infection, she was somewhat used to it. In fact, she had been plagued with respiratory problems…

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Company Raises $80 Million to Develop Treatment for Cystic Fibrosis Linked to Rare Mutations
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Company Raises $80 Million to Develop Treatment for Cystic Fibrosis Linked to Rare Mutations

According to a story from Fierce Biotech, there have been some impressive advances in the treatment of cystic fibrosis recently. The latest milestone was in developing and approving the drug…

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Cystic Fibrosis Patients Are Living Longer Thanks to Improved Clinical Practices and Therapies
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Cystic Fibrosis Patients Are Living Longer Thanks to Improved Clinical Practices and Therapies

  My American Nurse recently carried an uplifting article showing increasingly positive changes for cystic fibrosis (CF) patients. A network of over one hundred thirty centers throughout the U.S. provide…

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The FDA is Developing, Approving, and Expediting Exciting New Therapies
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The FDA is Developing, Approving, and Expediting Exciting New Therapies

  Janet Woodcock, Director of the FDA’s Center for Drug Evaluation and Research (CDER) recently gave an interview to the publication FDA Voices about the agency’s approval in 2019 of a…

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An In-Depth Look at the European Medicines Agency’s Orphan Drug Designation Post-Brexit
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An In-Depth Look at the European Medicines Agency’s Orphan Drug Designation Post-Brexit

  On February 3, 2020, twenty-seven newly installed flags of the European Union stood in the gleaming lobby of the new European Medicines Agency (EMA) headquarters in Amsterdam. The Charcot-Marie-Tooth…

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“We Were Most Excited to Someday Not Take Pills and to Not Do Vest Therapies”: Her Lifetime With Cystic Fibrosis

As originally reported in Cystic Fibrosis Life Foundation, Martha has spent her 24 years of life with cystic fibrosis. She was born with the rare disease which means for a…

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As the ACA Faces Another Court Challenge, Patient Groups Urge Quick Action
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As the ACA Faces Another Court Challenge, Patient Groups Urge Quick Action

According to a story from newsroom.heart.org, one of the most substantial domestic policy achievements of the Obama administration was the passage of the Affordable Care Act (ACA). Since its passage,…

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