November 23, 2020November 19, 2020 My Experience With COVID-19 Life would be much easier if every complicated disease or disorder weren’t so complicated. COVID-19, cystic fibrosis, depression — if they all manifested uniformly ... Read more
November 23, 2020November 23, 2020 S. Aureus Found Mostly in Lung Mucus, Not Tissue, Pig Model Shows Using pig lungs as a model, scientists discovered that Staphylococcus aureus, a species of bacteria often found in the lungs of children with cystic fibrosis ... Read more
November 20, 2020November 20, 2020 CF Foundation Seeks Minority Patient Voices on Inequalities in Care, Research In an effort to address racism within the cystic fibrosis (CF) community and the health disparities it fosters, the Cystic Fibrosis Foundation (CFF) is ... Read more
November 19, 2020November 19, 2020 Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and ... Read more
November 19, 2020November 19, 2020 Trial of MS1819, Pancreatic Enzyme Therapy, May Add New Patient Arm AzurRx BioPharma is requesting a new patient arm be added to its ongoing Phase 2b trial investigating MS1819 capsules as a treatment for exocrine pancreatic insufficiency (EPI) in ... Read more
cystic fibrosis, News A. fumigatus Lung Infections Linked to Age, Long-term Antibiotic Use November 18, 2020November 19, 2020 Adult age up to 50 and chronic antibiotic use seem to be the greatest ...
Columns, Life in the Grey – a Column by Bailey Anne Vincent I Wish I Never Had to Work Out Again — Until Tomorrow November 17, 2020November 16, 2020 I am never going to be well enough to work out. I realized this ...
Columns, Victorious - a Column by Brad Dell A Life Stranger (and Better) Than Fiction November 17, 2020November 13, 2020 People often declare my life to be stranger than fiction. (It’s true, and it’s ...
cystic fibrosis, News Pegylation Provides Long‐acting Version of Dornase Alfa for CF Treatment November 17, 2020November 17, 2020 A modified version of Pulmozyme (dornase alfa), a widely-used cystic fibrosis (CF) therapy, lasts ...
News Relizorb Use Supports Weight, Height Gains in Tube-fed Patients, Study Finds November 16, 2020November 16, 2020 Relizorb, Alcresta Therapeutics‘ pancreatic enzyme treatment, led to significant weight and height improvements among ...
Columns, Valiant Voice – a Column by Lara Govendo Praising the Caregivers Who Helped Me Endure November 13, 2020November 11, 2020 If you told me 10 years ago that I would be reliant on my ...
Trikafta Soon Be Up for Approval, Cystic Fibrosis Canada Reporting November 13, 2020November 13, 2020 Following yearlong advocacy efforts, the triple-combination therapy Trikafta is expected to soon come up for approval ...
KB407 Seen in Animal Studies to Safely Deliver Gene That Might Treat CF November 12, 2020November 12, 2020 New findings from animal studies support the safety and effectiveness of KB407, a potential ...
Phase 1/2 Trial of MRT5005, Potential Treatment for All With CF, Resumes in US November 11, 2020November 11, 2020
Home Monitoring of Lung Health Possible With NuvoAir System, Studies Report November 10, 2020November 10, 2020
CFF Awards $2.4M to Advance CB-280 in Preventing Lung Infections November 9, 2020November 9, 2020 The Cystic Fibrosis Foundation (CFF) has awarded up to $2.4 million to Calithera Biosciences to ...
CF Foundation Award to Support Work Into Inhalable, Non-viral Gene Therapy November 5, 2020November 5, 2020
FDA Approves Bronchitol Inhalation Powder as Add-on Treatment for Adult CF Patients November 4, 2020November 12, 2020
How to Be Better at Making Someone Feel Better November 3, 2020October 30, 2020 If I were a doctor, I would say hello and ask a couple questions ...
Identifying Changes to P. aeruginosa in Lungs May Help With Treatment November 3, 2020November 3, 2020
NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits November 2, 2020November 2, 2020
Columns, Valiant Voice – a Column by Lara Govendo Respiratory Care Teams Are the MVPs of CF Care October 30, 2020November 3, 2020 As a person with cystic fibrosis, I’ve formed close-knit relationships with care providers in ...
cystic fibrosis, News Envara Health Launches Encala, Supplement to Enhance Fat Absorption in CF Patients October 30, 2020October 30, 2020 Envara Health has launched Encala (formerly Lym-X-Sorb), a nutritional supplement designed to improve fat ...
cystic fibrosis, News Screening for Carriers of CF May Be Cost-free Option for Couples in Australia October 29, 2020November 2, 2020 The Australian Medical Services Advisory Committee (MSAC) has recommended that the costs of screening for ...
News, syndicated UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner October 28, 2020October 28, 2020 A photo of a bespectacled young boy, his red baseball cap slightly askew as ...
cystic fibrosis, News New Machine Learning Technologies Could Improve Disease Prediction in CF October 28, 2020October 28, 2020 Machine learning, a method of data analysis, could improve disease prediction and bring precision ...
Columns, Life in the Grey – a Column by Bailey Anne Vincent ‘It’s Not Me, It’s Me’: Breaking Up With My Body October 27, 2020October 23, 2020 “Is this what I’m going to do forever?” I asked my dad. We were ...
cystic fibrosis, News Lenabasum May Help Lessen Flares in CF Patients, Post-hoc Trial Analyses Find October 27, 2020October 27, 2020 Oral lenabasum failed to significantly reduce the frequency of pulmonary exacerbations in people with cystic fibrosis ...
Columns, Path Unknown - a Column by Wendy Caroline Which Is More Important: Physical or Mental Health? October 26, 2020October 22, 2020 When I was in high school, an informational book about cystic fibrosis made its ...
cystic fibrosis, News Preclinical Work Supports ELX-02, Potential Treatment for Nonsense Mutations October 26, 2020October 26, 2020 Eloxx Pharmaceuticals presented preclinical safety and efficacy data supporting ELX-02, its investigational treatment for ...
cystic fibrosis, News $200K Donation Will Support Respiratory Care on CF, Other Lung Disorders October 23, 2020October 23, 2020 The National Board for Respiratory Care (NBRC) has launched “CHOOSE ONE: Every Breath Counts ...
cystic fibrosis, News CFF Award to Advance Synspira’s Treatments for Malabsorption, Lung Infections October 22, 2020October 22, 2020 The Cystic Fibrosis Foundation (CFF) is awarding Synspira Therapeutics up to $14 million in additional ...
cystic fibrosis, News Inhaled Tobramycin Effectively Treats Initial P. aeruginosa Infections in CF October 21, 2020October 21, 2020 Inhaled tobramycin alone works as well at eradicating an initial infection by Pseudomonas aeruginosa bacteria in ...
Columns, Life in the Grey – a Column by Bailey Anne Vincent To the Doctors Who Didn’t Listen October 20, 2020October 16, 2020 To the doctors who didn’t listen to me: You were wrong. I remember the ...
cystic fibrosis, News FDA Clears Clinical Trial of AP-PA02 Phage Therapy for P. aeruginosa Infections October 20, 2020October 20, 2020 The U.S. Food and Drug Administration (FDA) cleared Armata Pharmaceuticals‘ investigational new drug (IND) ...
News, syndicated Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say October 19, 2020October 19, 2020 A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience ...
Columns, Valiant Voice – a Column by Lara Govendo True Story: I Got Fired for Being Sick October 16, 2020November 2, 2020 I remember what it felt like to get fired for being sick: that pit ...
cystic fibrosis, News Trial Enrolling Patients With Severe Digestive Enzyme Deficiency in Europe October 16, 2020October 16, 2020 A Phase 2 clinical trial investigating MS1819 in combination with stable pancreatic enzyme replacement therapy (PERT) to treat exocrine ...
cystic fibrosis, News New Inhaled Therapy IONIS-ENAC-2.5Rx Shows Promise in Phase 1/2a Trial October 15, 2020October 15, 2020 Ionis Pharmaceuticals’ investigational inhaled therapy IONIS-ENAC-2.5Rx showed promise in a Phase 1/2a study as ...
