Cystic Fibrosis Patient’s Inspiring Speech to New Doctors Stresses The Importance of Patients as Partners

Gunnar Esiason, a 28-year-old cystic fibrosis (CF) patient, just delivered an inspirational pre-commencement speech to the 2019 St. Louis University School of Medicine graduating class. Quite frankly, it contains wisdom…

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The Cure Rare Disease Foundation is Trying to Change the “One Size Fits All” Approach Toward Treatment

The Cure Rare Disease Foundation The Cure Rare Disease Foundation's mission is to increase collaborative efforts between researchers in order to accelerate the development of customized therapies for individuals living with…

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Cystic Fibrosis Patient Goes “From Bed-Bound and Tube-Fed to School-Attending and Sushi-Eating” with Engineered Phage Therapy

Phage Therapy Phages, or bacteriophages, are the natural enemy of viruses. They are the most abundant organisms in the biosphere. Researchers have used phages as treatments before, however after the…

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Genetically Modified Viruses Successfully Treat Severely Infected Cystic Fibrosis Patient

According to a story from ArcaMax, history was recently made when a 15 year old teen with a severe "superbug" case of Mycobacterium abscessus infection was successfully treating using specially modified…

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Parents are Worried That Only One of Their Two Children Will Get Access to Cystic Fibrosis Drug

  A recent article in CBC News describes the heartbreak and struggle of a Canadian couple appealing to the Canadian government to fund medication for their younger son. Both their children, Andre…

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Family Faces Deportation from Australia Because Son’s Cystic Fibrosis Would be a “Burden on Taxpayers”
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Family Faces Deportation from Australia Because Son’s Cystic Fibrosis Would be a “Burden on Taxpayers”

According to a story from The Irish Times, a couple's application for permanent residency in Australia has been rejected twice now following an appeal. Anthony and Christine Hyde, along with…

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As UK Cystic Fibrosis Patients Push for Drug Coverage, a Girl That Died too Soon Becomes the Face of the Campaign
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As UK Cystic Fibrosis Patients Push for Drug Coverage, a Girl That Died too Soon Becomes the Face of the Campaign

According to a story from express.co.uk, Elle Morris was only 11 years old when she died from a severe lung infection. Elle was born with cystic fibrosis, a serious genetic…

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Animal Model Study Using CRISPR Could Lead to Successful Treatment of Rare Lung Diseases

According to a story from EurekAlert!, a group of researchers affiliated with Penn Medicine and Children's Hospital of Philadelphia recently conducted an experiment in which the scientists used CRISPR gene…

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Study Demonstrates That Mucus, Not Infections, Inflict Damage in Cystic Fibrosis

According to a story from Medical Xpress, a recent study conducted by researchers from the UNC School of Medicine has illustrated that the accumulation of sticky, abnormal mucus, along with…

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Some of the Most Expensive Therapies for Cystic Fibrosis Aren’t Worth it for Some Patients
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Some of the Most Expensive Therapies for Cystic Fibrosis Aren’t Worth it for Some Patients

According to a story from Cystic Fibrosis News Today, Elizabeth Rogers, a cystic fibrosis patient, is just one of the many who have been disappointed by the lack of impact…

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Common, Symptomless Form of Herpes May be Linked to Cystic Fibrosis
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Common, Symptomless Form of Herpes May be Linked to Cystic Fibrosis

According to a publication from EurekAlert, a recent study suggests a common, typically symptomless form of the herpes virus called cytomegalovirus may cause faster disease progression in cystic fibrosis (CF)…

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Collaborative Effort to Improve Patient Access to Personalized Medicine

The FDA previously announced their plan to hire 50 new employees specifically to manage the influx of gene therapy applications. Currently, they have approximately 800 applications awaiting review and they…

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Loneliness in a Rare Disease Diagnosis: A Different Kind of Co-Morbidity

Rare diseases such as Tourette's syndrome and cystic fibrosis can be, among all of the other challenges that come with their diagnosis, extremely isolating. A recent article on Psychology Today explains…

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Bioscience Companies in Ohio Take Aim at Rare Diseases
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Bioscience Companies in Ohio Take Aim at Rare Diseases

According to a story from BioPortfolio, Rare Disease Day, which took place on February 28th, 2019, serves as a time of reflection on the progress that has been made in…

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EU Establishes United Repository for Rare Patient Data and Standards for Collection

Each year, Rare Disease Day (February 28th) incites individuals and organizations to investigate and reform their rare disease efforts. This year, the EU Commission has made drastic changes which should…

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