Laura Bonnell’s two children have cystic fibrosis (CF). This condition affects the respiratory system and can severely impact patient’s immune system. She explains how she didn’t own a single N95…
Many rare disease patients understand the financial burdens of living with a rare disease. As the therapies are only supporting a small number of patients, the price tag is often…
Selma Santos has met many nurses over the course of her life. Having a daughter with cystic fibrosis means spending a lot of time in the hospital or at doctor's…
Dan Hopkins is a bowler who has recently raised over $21,000 for cystic fibrosis (CF) in a 65 hour long bowl-a-thon. While he may be exhausted and sore, he is…
As reported in Warta Saya; for kids with cystic fibrosis (CF), a daily exercise needed to clear the lungs of the disease's characteristic build-up of mucus can feel long and…
Bulgarian cystic fibrosis patient joins international campaign standing up for the rights of patients to access essential medicines Rositsa Malinova, a 22-year-old resident of Pazardzhik, Bulgaria, is taking on the…
Transitions to adult care for patients who have a chronic respiratory disease, like cystic fibrosis, or a type of neuromuscular disease that influences the respiratory system is something that the medical…
Maintaining lung function is a major goal of cystic fibrosis (CF) treatment. In order to accomplish this goal, doctors will use airway clearance techniques, such as vest therapy. The problem…
Lung infections are a common symptom of cystic fibrosis, with Staphylococcus aureus being the most prevalent. While physicians can treat this infection using antibiotics, they do not yet understand its role…
by Danielle Bradshaw from In The Cloud Copy A recently performed study has demonstrated that it is possible to use tablets to screen patients that have chronic lung conditions -…
Ionis Pharmaceuticals has recently released the data from their clinical trial of IONIS-ENAC-2.5Rx, a treatment for cystic fibrosis. According to Newswire, the study showed very positive results, with healthy volunteers…
As reported in Cystic Fibrosis News; the 2020 Santander Universities Entrepreneurship Awards are part of an initiative to encourage young entrepreneurship via support of student led startups. This year there…
The FDA has recently granted two designations, the rare pediatric disease and orphan drug designations, to Spirovant Sciences' gene therapy for cystic fibrosis (CF). SPIRO-2101 will now be able to…
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…
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…
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…
As reported in the Global News; what if you had a draining rare disease, and a life-changing treatment was out there but wasn't available in your country? At Dalhousie University…
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…
Arrowhead Pharmaceuticals has began dosing patients in its AROENaC1001 trial, which evaluates ARO-ENaC as a treatment for cystic fibrosis. 54 patients will be treated with this therapy in an effort…
CFRI Presents: The 33rd Annual National CF Education Conference: Partners in Progress ~ An Exciting Virtual Experience In light of the ongoing coronavirus/COVID-19 pandemic, CFRI's annual education conference will be…
Aridis Pharmaceuticals has released the data from the first phase of its clinical trial of AR-501. This treatment is inhaled to clear lung infections that are commonly experienced by those…
The Change in Hospitals Due to COVID-19 Between 10 and 15 percent of all hospital staff is forced to isolate due to the virus at any one time. This means…
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…
Trevor O'Sullivan Trevor O'Sullivan, who lives in Ireland, has cystic fibrosis (CF). He has undergone two liver transplants. He was the 42nd person in the country to have this surgery.…
U.S. company, Vertex Pharmaceuticals, is the creator of three treatments for cystic fibrosis: Orkambi, Symdeco, und Kalydeco. These drugs were unavailable in Switzerland, as Vertex and Swiss health officials were…
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