The FDA Has Provided 16 Million Dollars to Scientists to Continue Rare Disease Research During the Pandemic
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The FDA Has Provided 16 Million Dollars to Scientists to Continue Rare Disease Research During the Pandemic

 The United States FDA has just announced that they will be providing  6 new grants, which are worth 16 million dollars for rare disease research. These grants will last a…

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Vertex Will Present Data on CFTR Modulators as Treatments for Cystic Fibrosis
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Vertex Will Present Data on CFTR Modulators as Treatments for Cystic Fibrosis

Vertex Pharmaceuticals will present data on the long-term use of their cystic fibrosis (CF) treatments at the 43rd European Cystic Fibrosis Digital Conference, and then again at the 2020 North…

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KALYDECO Now the First FDA-Approved CFTR Modulator for Pediatric Patients with Cystic Fibrosis
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KALYDECO Now the First FDA-Approved CFTR Modulator for Pediatric Patients with Cystic Fibrosis

  On September 25, biotechnology company Vertex Pharmaceuticals Incorporated ("Vertex") announced FDA-approval of KALYDECO (ivacaftor) for pediatric patients with cystic fibrosis (CF). Specifically, KALYDECO can treat infants between 4-6 months…

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Experimental Treatment for Cystic Fibrosis Lung Infections gets Updated Trial Design
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Experimental Treatment for Cystic Fibrosis Lung Infections gets Updated Trial Design

According to a story from BioSpace, the biopharmaceutical company Aridis Pharmaceuticals, Inc., has recently announced that it has struck an agreement with the US Food and Drug Administration (FDA) in…

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Cystic Fibrosis Foundation and ContraFect Enter Agreement to Develop CF Treatment
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Cystic Fibrosis Foundation and ContraFect Enter Agreement to Develop CF Treatment

The biotechnology company ContraFect has entered into an agreement with the Cystic Fibrosis Foundation. This funding agreement aims to investigate and develop direct lytic agents (DLAs) as a treatment for…

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The Most Effective Cystic Fibrosis Therapy to Date Will be Available on the NHS
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The Most Effective Cystic Fibrosis Therapy to Date Will be Available on the NHS

According to a story from england.nhs.uk, a recent agreement struck between the UK's NHS and Vertex Pharmaceuticals will herald a major improvement for the many of the country's cystic fibrosis…

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Three Young People With Chronic Illness Talk About the Challenges They Face
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Three Young People With Chronic Illness Talk About the Challenges They Face

  Three people with an eye on the future talk about their innermost feelings and the fact that their lives may be interrupted at any time by their chronic illness.…

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The ADA is 30 Years Old. What Does it Mean to Young People with Disabilities?
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The ADA is 30 Years Old. What Does it Mean to Young People with Disabilities?

According to a story from Youth Today, the Americans with Disabilities Act (ADA) was first passed 30 years ago, in 1990. This historic law helps protect people that live with…

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Pre-Order “Thousand Years” from Singer Marc Cotterill, Inspired by His Cystic Fibrosis Experience

  At one point in his journey with cystic fibrosis, Marc Cotterill experienced a rapid loss in lung function. In fact, it dropped to just 29%. As his health worsened,…

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May is Cystic Fibrosis Awareness Month: Spreading Rare Disease Awareness
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May is Cystic Fibrosis Awareness Month: Spreading Rare Disease Awareness

May is recognized annually as Cystic Fibrosis (CF) Awareness Month. Each year, this rare disease community comes together in order to help spread awareness about cystic fibrosis among the general…

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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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