Let’s Make Cystic Fibrosis Awareness Month Work for Us!
May is Cystic Fibrosis (CF) awareness month! CF is one of the more devastating rare diseases in the community, often affecting children and young people. So let's be extra mindful…
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”
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
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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Cystic Fibrosis Patient Returns to Charity Work After Successful Treatment
According to a story from the Daily Record, cystic fibrosis patient Kelli Gallacher found that she was able to stabilize her disease using the drug Symkevi. Now that her own…
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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
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…
Why Does Rare Disease Keep Coming Up on The Bachelor?
My first admission is that I actually know quite a bit about ABC's The Bachelor. Yes, that includes The Bachelorette too. I first started watching “ironically“ with my girlfriend, who…
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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Cystic Fibrosis Research Should Seek to Involve Patients in Trial Design
According to an article at HealthEuropa, including patients and their families as an important component of cystic fibrosis research is a requirement when developing future treatments for the disease. That's…
Personalized Medicine Could be Improved if We Stop Investigating Genes in Isolation
"The simple idea of a single gene leading to a single disease is more likely to be an exception than a rule." Finding the Disease-Causing Genes Things would be, not…
Siblings with Cystic Fibrosis: Inseparable Despite their Diagnosis
Zachary and Imogen Jones are brother and sister with cystic fibrosis (CF). While Imogen is older, she received her CF diagnosis after her brother. It was actually through educational programs…
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…
Common Antifungal Drug Shows Promise in Treating Cystic Fibrosis
Cystic Fibrosis Cystic Fibrosis (CF) is a rare disease caused by a defected CFTR gene. It results in a buildup of mucus which impairs breathing and makes the lungs susceptible…
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The Book/Film “Five Feet Apart” Stokes Controversy in the Cystic Fibrosis Community
The book Five Feet Apart was first released to the public in November 2018 and on March 15th, 2019, a film based on the novel was released into theaters. The…
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
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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The Ability to Study Individual Cells is Leading to New Scientific Discoveries
According to a story from nbcnewyork.com, scientific research on cells was always a challenging task. Trying to study a certain trait used to mean looking at a tissue sample, which…
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…
New Hope for Rare Disease Patients
Rare disease isn't as rare as it sounds. Ten percent of Americans have a rare disease-- and there are almost 7,000 known rare diseases. A rare disease, also known as…
Tiffany Senter’s Cystic Fibrosis Story: Gaining Strength from Idol Marilyn Monroe
Cystic Fibrosis Cystic fibrosis (CF) is a rare condition that causes mucus to build up in the lungs and the digestive system. It results in chronic lung infections, lung inflammation, and…
Phase 3 Study in Europe Shows Continued Positive Results for Potential New Cystic Fibrosis Treatment
Cystic Fibrosis Cystic fibrosis (CF) is a rare disease caused by the lack (or malfunctioning) of the cystic fibrosis transmembrane conductance regulator (CTFR) protein. This occurs when children inherit a mutated…
