January 27, 2021January 27, 2021 COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say The two COVID-19 vaccines that recently received emergency approval from the U.S. and other worldwide regulatory agencies are expected to pose little risk to ... Read more
January 27, 2021January 27, 2021 Bronchoscopy Plus BAL Safe Way of Checking Lung Health of Patients Using bronchoscopy to examine the airways and the surrounding tissues of people with cystic fibrosis, coupled with the collecting of lung fluid through bronchoalveolar lavage ... Read more
January 26, 2021January 22, 2021 Confession: Vaccine Politics Are Adding to My Sadness I am in a bathroom feeling sick, writing about being sick, not wanting to be sick. I don’t want this to be my life ... Read more
January 26, 2021January 25, 2021 What Will You Do to Ensure Others Aren’t Excluded? I’ve often written that “the disease itself isn’t the worst part, rather it’s the …” The medication side effects, the childhood trauma, the dread, ... Read more
January 26, 2021January 26, 2021 Pneumonia Seen as More Likely in CF Patients, Carriers of European Ancestry Cystic fibrosis (CF) patients and carriers — those with mutations in only one copy of the CFTR, the gene associated with CF — of European ... Read more
Columns, Mutations & Conversations - a Column by Tré LaRosa The Long Journey of Learning to Love My Own Body January 25, 2021January 21, 2021 I used to be ashamed about my insecurities. I believed that as a man, ...
cystic fibrosis, News Minorities in US Ineligible for CFTR Modulators Due to Poorly Studied Mutations January 25, 2021January 25, 2021 Individuals with cystic fibrosis (CF) from racial and ethnic minority groups in the U.S. ...
News, syndicated NORD’s Caregiver Respite Program Continues Through Pandemic January 22, 2021January 22, 2021 Caring for a loved one with a rare disease, especially during these uncertain times, ...
cystic fibrosis, News Dosing Begins in Extension Study of Yeast-derived Treatment for EPI January 22, 2021January 22, 2021 The first two patients have been dosed in the Phase 2b OPTION 2 extension ...
cystic fibrosis, News COVID-19 Lockdown Linked to Fewer Flares in Children in Small Study January 21, 2021January 21, 2021 Limits placed on social interaction by the COVID‐19 pandemic appear to have led to a drop ...
cystic fibrosis, News Compounds Raise Kalydeco’s Efficacy, May Be Future Combo Therapy January 20, 2021January 20, 2021 Researchers boosted the activity of the cystic fibrosis transmembrane regulator (CFTR), the faulty protein ...
Why I Broke the ‘6 Feet Apart’ Rule January 19, 2021January 15, 2021 Staying 6 feet apart is not new to me. It’s not new because I ...
CF Patients and Families Favoring Telehealth as Option for Care, Survey Finds January 19, 2021January 19, 2021 People with cystic fibrosis (CF) and their families are largely satisfied with the convenience ...
Bacteria in Irish Soil Seen to Block Those Tied to Chronic Lung Infections January 18, 2021January 18, 2021
UK Rare Diseases Framework Opens to Improve Diagnosis, Access to Care January 14, 2021January 14, 2021
Cholesterol Metabolism Impaired in CF Mouse Model January 13, 2021January 13, 2021 The metabolism of cholesterol is impaired in a mouse model of cystic fibrosis, a ...
Phase 1/2 Trial to Test Phage Therapy for Chronic P. aeruginosa Infections January 12, 2021January 12, 2021
NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum January 11, 2021January 11, 2021
Study Examines Effects of Socioeconomics on Health of Youngsters January 8, 2021January 8, 2021 Children with cystic fibrosis (CF) who live in more socioeconomically disadvantaged areas of the ...
Inhaled-IV Antibiotic Combo May Better Treat Acute Flares Than IV-only Mix January 7, 2021January 7, 2021
Fecal Protein Tied to Worse GI Symptoms, Quality of Life in CF Children January 6, 2021January 6, 2021
cystic fibrosis, News Health Canada Giving Priority Review to Trikafta January 5, 2021January 5, 2021 Health Canada is reviewing an application that seeks the approval of Trikafta, a triple ...
cystic fibrosis, News Arcturus to Develop ARCT-032 as RNA Therapy for CF January 4, 2021January 4, 2021 Arcturus Therapeutics has selected ARCT-032, an aerosolized RNA-based therapy, to be developed as a ...
News Small Study Shows Tobramycin Safely Treats Lung Infection in Infants With CF December 31, 2020December 31, 2020 Inhaled antibiotic tobramycin safely eradicated early Pseudomonas aeruginosa infection in cystic fibrosis (CF) patients younger ...
Columns, Victorious - a Column by Brad Dell I Am a Lung Transplant Recipient, and I Had COVID-19 December 30, 2020December 29, 2020 At the start of November, I was infected with COVID-19. My heart rammed repeatedly ...
cystic fibrosis Top 10 Cystic Fibrosis Stories of 2020 December 29, 2020January 4, 2021 Cystic Fibrosis News Today brought you daily coverage on research discoveries, treatment developments, clinical ...
Columns, Life in the Grey – a Column by Bailey Anne Vincent I’m Already Scheduling Surgeries for Next Year December 22, 2020December 17, 2020 Today, I woke up and left for a doctor’s appointment. It was 8 a.m., ...
cystic fibrosis, News FDA Expands Labels for 3 Vertex CFTR Modulators December 22, 2020January 5, 2021 The U.S. Food and Drug Administration (FDA) has expanded the number of cystic fibrosis (CF)-related ...
cystic fibrosis, News Antibiotic Gentamicin Can Be Effective Without Causing Deafness, Study Finds December 22, 2020December 22, 2020 Scientists discovered the subtypes of gentamicin — a broad-spectrum antibiotic often used to treat ...
Columns, Mutations & Conversations - a Column by Tré LaRosa Yes, I Will Get the COVID-19 Vaccine December 21, 2020December 17, 2020 I can’t remember when I first fell in love with science. I loved learning ...
cystic fibrosis Claire’s Place Expands COVID-19 Emergency Fund, Work Proudly Program December 21, 2020December 21, 2020 The nonprofit Claire’s Place Foundation announced that its COVID-19 Emergency Fund and Work Proudly ...
cystic fibrosis, News CF Trust Partners With CF Foundation to Develop Gene-editing Therapies December 18, 2020December 18, 2020 The U.K. Cystic Fibrosis Trust is partnering with the U.S. Cystic Fibrosis Foundation to ...
cystic fibrosis, News Production Increases for Pyocin S5, Potential Antibiotic for Treating Lung Disease December 17, 2020December 17, 2020 Project GAIA, establishing a large-scale manufacturing process for Pyocin S5, an investigational antibiotic for ...
cystic fibrosis, News Potential Antibiotic Appears to Effectively Treat M. abscessus Infections December 16, 2020December 16, 2020 A newly developed antibiotic, called T405, appears to effectively kill Mycobacteroides abscessus, a difficult-to-treat ...
Columns, Life in the Grey – a Column by Bailey Anne Vincent Honest Question: Am I Losing My Mind? December 15, 2020December 10, 2020 Who would I be if I lost the parts of me that make me ...
Columns, Victorious - a Column by Brad Dell CF Is Infuriating, but I Shouldn’t Have Unleashed My Anger on Family December 15, 2020December 14, 2020 Two months ago, I watched myself die, then get resurrected on television. Sort of. ...
cystic fibrosis, News CF Foundation Awards Research Projects to Advance Therapies for All CF Patients December 15, 2020December 15, 2020 The Cystic Fibrosis Foundation has awarded a total of $1.7 million in nine grants ...
Columns, Path Unknown - a Column by Wendy Caroline The Existential Crisis of Going From Dying to Living December 14, 2020December 9, 2020 Imagine living your whole life knowing you have an early expiration date. Then you ...
cystic fibrosis, News CF Foundation Awards $2.76M to Research Differing COVID-19 Effects on Patients December 14, 2020December 14, 2020 The Cystic Fibrosis Foundation (CFF) has awarded $2.76 million to fund 11 laboratory studies ...
