Updates

March 22, 2019March 22, 2019
New Strategy May Boost Antibiotics’ Efficacy in CF Patients, Study Suggests

Removing a key metabolite called pyruvate from Pseudomonas aeruginosa and Staphylococcus aureus bacteria biofilms — two of the most common bacteria found in ... Read more
March 22, 2019March 20, 2019
Having Cystic Fibrosis Doesn’t Mean Giving Up My Hobbies

When you have cystic fibrosis, having hobbies is an essential part of maintaining mental health. It gives you something else to focus on and ... Read more
March 21, 2019March 19, 2019
The Isolation of Self-employment Is Worse with CF

Loneliness is a killer. It’s perhaps not something those of us with life-limiting physical conditions spend much time thinking about. But the statistics are ... Read more
March 21, 2019March 21, 2019
New Method to Determine Best PERT Dose Shows Potential in Young CF Patients, Pilot Study Reports

A new method to estimate the best dose of enzyme supplements for pancreatic enzyme replacement therapy (PERT) based on different meals shows promise in ... Read more
March 20, 2019March 20, 2019
Early Viral Infections in CF Infants Associated with Lung Inflammation, Bacterial Infections, Study Finds

Early viral infections cause inflammation and bacterial infections in the lower airway of the lungs of infants with cystic fibrosis (CF), according to a ... Read more

Columns, Victorious - a Column by Brad Dell

I’m Getting Better at Detecting Depression’s Creep and Shooing It Away
March 19, 2019March 21, 2019
I shoulda seen it coming. (That’s what I always say in hindsight, once it ...
cystic fibrosis, News

Amphotericin Holds Promise as Treatment for All CF Patients, Preliminary Study Shows
March 19, 2019March 19, 2019
Amphotericin B, a widely used antifungal medication, may be a potential treatment to restore ...
Columns, Mutations & Conversations - a Column by Tré LaRosa

Let’s Talk About Death and Grief
March 18, 2019March 15, 2019
I consider myself a conversation-starter. I like discussing serious topics and sharing my genuine ...
cystic fibrosis

Virus Can Help Treat Pseudomonas aeruginosa in CF, Study Suggests
March 18, 2019March 18, 2019
A new study shows that bacteriophages, viruses that naturally infect bacteria, can be used ...
cystic fibrosis, News

Movie ‘Five Feet Apart’ Sparks Mixed Reactions Among Cystic Fibrosis Community
March 15, 2019March 15, 2019
Warning: Spoilers for the movie are contained in this story. Mention a rare disease ...
Columns, Las Cosas de la Vida - a Column by Luisa Palazola

Sleep Tight, CF Community
March 14, 2019March 13, 2019
Life has a way of changing plans and allowing others to help you embrace ...

Subscribe to our mailing list

Get regular updates delivered to your email box.

Thanks! Please check your email for a confirmation email.

Taking to the Skies with Cystic Fibrosis
March 14, 2019March 13, 2019
The gentleman in front of me is held up. An unsmiling, uniformed official calls ...
Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn
March 14, 2019March 14, 2019
Madeline Collin, a 24-year-old activist with Gaucher disease, worries that patients like her will ...
Symdeko Approved in Australia for CF Patients Age 12 or Older With Certain Gene Mutations
March 14, 2019March 14, 2019
Lung Enzyme Cathepsin S is New Therapeutic Target for CF and COPD
March 13, 2019March 13, 2019
CF Patient Joshua Skampo Gearing Up for 4th Boston Marathon
March 12, 2019March 12, 2019
My Thoughts on Social Security Disability Insurance
March 11, 2019March 8, 2019

I See Poetry in the Scientific Process
March 11, 2019March 22, 2019
I walk two paths: One is that of logic in my career as a ...
ContraFect Granted Up to $6.94M to Develop Novel Therapy Against ESKAPE Pathogens
March 11, 2019March 11, 2019
Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist
March 11, 2019March 11, 2019
Positive Data from VX-445 Triple Combo Regimen Prompt Vertex to Seek Regulatory Approval
March 8, 2019March 8, 2019

Window for More Effective Treatment of CF Lung Infections is 2 to 3 Years, Study Suggests
March 7, 2019March 20, 2019
Treatment of Pseudomonas aeruginosa lung infections in cystic fibrosis (CF) patients could be more effective if ...
How Does Cystic Fibrosis Affect Our Fear of Failure?
March 7, 2019March 22, 2019
NIH Rare Disease Day Highlights Joint Networks Advancing Array of Research
March 7, 2019March 7, 2019

cystic fibrosis, News

Translate Bio Advancing MRT5005 Through Ongoing Phase 1/2 Trial in CF Patients
March 6, 2019March 19, 2019
An ongoing Phase 1/2 clinical trial exploring Translate Bio’s investigational therapy MRT5005 will start ...
cystic fibrosis, News

MaRS Innovation Supports LAB150 Research on New Therapeutics for CF and Other Conditions
March 5, 2019March 5, 2019
MaRS Innovation recently announced the launch of two new projects targeting the development of ...
Columns, Victorious - a Column by Brad Dell

Don’t Distance Yourself from Your OG Carers
March 5, 2019March 22, 2019
We sat in pristine sands shadowed by titanic sentries dubbed The Twelve Apostles. At ...
Columns, Mutations & Conversations - a Column by Tré LaRosa

The Power of Escapism
March 4, 2019March 20, 2019
One of the first fiction books I read in adulthood was a book called ...
cystic fibrosis, News

European HIT-CF Project to Explore ELX-02 as Treatment for Rare CF Mutations
March 4, 2019March 19, 2019
Eloxx Pharmaceuticals will explore the potential of its lead investigational drug candidate, ELX-02, as ...
Social Clips

CF Family Friday: Polina and Nellie Bykova’s Sister Power
March 1, 2019March 15, 2019
Hi, I’m Luisa Palazola, the Cystic Fibrosis News community manager. This week for Family Friday ...
Becoming Visible by Elizabeth Rogers, Columns

My Sexuality’s Ties to CF
March 1, 2019March 13, 2019
Sexuality is complicated. Sexuality when you have chronic illness is doubly so. Finding out ...
Columns, Work that Works - a Column by Elly Aylwin-Foster

Becoming Perfectly Confident in an Imperfect Body
February 28, 2019March 15, 2019
Picture the scene: You’re standing in front of a sea of faces about to ...
cystic fibrosis, News

CF Market Research Report Includes Patients’ and Caregivers’ Perspectives
February 28, 2019March 15, 2019
NetNoggin has launched a new cystic fibrosis (CF) market research report to highlight patient and ...
cystic fibrosis

Low-dose Antibiotics Preserve Airway Bacterial Diversity, but at a Cost, Study Finds
February 27, 2019March 13, 2019
Using lower, or suboptimal, doses of antibiotics to treat lung infections in children and ...
Columns, Mutations & Conversations - a Column by Tré LaRosa

CF Science Is Unexpectedly Beautiful
February 25, 2019March 12, 2019
During my sophomore year of college, the background on my computer screen was a ...
cystic fibrosis

WODC 2019 Organizers Expect 1,200 to Attend Rare Disease Conference in April
February 25, 2019February 25, 2019
The world’s biggest gathering of rare disease researchers, patient groups, pharmaceutical executives, and government ...
cystic fibrosis, News

S. maltophilia Infection Does Not Raise Risk of CF-related Diabetes, Study Says
February 25, 2019March 15, 2019
Despite being commonly found in patients with cystic fibrosis-related diabetes, the bacteria Stenotrophomonas maltophilia cannot ...
Becoming Visible by Elizabeth Rogers, Columns

Evolving Toward Becoming Visible
February 22, 2019March 12, 2019
Doctors diagnosed me with cystic fibrosis (CF) at 18 months old and I recently ...
cystic fibrosis

New Gene Therapy Strategy May Reverse Effects of Disease-related Mutations, Study Shows
February 22, 2019March 12, 2019
A new strategy to genetically prevent disease-related mutations from occurring shows the potential to ...
Columns, Work that Works - a Column by Elly Aylwin-Foster

Taking Sick Leave Shouldn’t Cause Low Self-esteem
February 21, 2019March 7, 2019
During these last two weeks, I’ve felt the sickest I have in years. I ...
cystic fibrosis

NIH Funds Fight Against CF-associated Antibiotic Resistant Bacteria
February 21, 2019February 21, 2019
Researchers at Case Western Reserve University School of Medicine have received a $3.34 million grant ...
cystic fibrosis

Vienna to Host RARE2019 Meeting on Rare Diseases
February 20, 2019March 5, 2019
About 100 scientists, researchers, pharmaceutical executives, and others will converge on Austria’s capital city ...

Subscribe to our mailing list

Pin It on Pinterest