April 19, 2021April 15, 2021

Amid Mental Health Struggles, It’s Challenging to Work and Be Productive

Columns, Mutations & Conversations - a Column by Tré LaRosa

I can’t separate my physical malady from my mental diseases. Cystic fibrosis, depression, and anxiety are all linked, and they’re all separate. I think of my blend of comorbidities as ... Read more

April 19, 2021April 19, 2021

Assessing Treatment Burden, Complexity May Improve Therapy Adherence

News

Routine evaluations of how cystic fibrosis (CF) patients and their families are coping with the burden of therapeutic regimens — usually daily therapies that are complex and time-consuming — are ... Read more

April 16, 2021April 14, 2021

After Transplant, It’s OK to Struggle and Feel Grateful

Columns, Valiant Voice – a Column by Lara Govendo

I talk about my life with a double-lung transplant regularly. Sharing the double-edged sword of transplant during National Donate Life Month may help others see how this life can be ... Read more

April 16, 2021April 16, 2021

Bioengineer to Use $2M Grant to Study Gene Editing for CF

News

A bioengineer at Rice University will use a more than $2 million federal grant for a project to “repair” harmful mutations that cause cystic fibrosis (CF) using a potentially more ... Read more

April 15, 2021April 15, 2021

EveryLife Scholarship Fund Open Until May 7 for Adults With Rare Diseases in US

News, syndicated

The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through training and education. For a ... Read more

April 15, 2021April 15, 2021

Claire’s Place Foundation Launches Website to Connect CF Community

cystic fibrosis, News

To mark its 10th anniversary, Claire’s Place Foundation has launched a website that seeks to connect the community of people affected by cystic fibrosis (CF). “Our new website is a ... Read more

April 14, 2021April 14, 2021

‘Fun’ Sweat-measuring Sticker May Aid CF Diagnosis in Children

News

A soft skin sticker that can rapidly measure chloride levels in sweat, which are elevated in cystic fibrosis (CF) patients, may help avoid delays in diagnosis and treatment associated with ... Read more

April 13, 2021April 8, 2021

Being a Parent Will Kill You (and Other Truths We Never Talk About)

Columns, Life in the Grey – a Column by Bailey Anne Vincent

I am writing this from my bedroom — trapped. Like a character in a movie. Or Jim Gaffigan when he talks about being outnumbered. This is my SOS letter to ... Read more

April 13, 2021April 13, 2021

CF Therapy’s Effectiveness With Rare Mutations Can Be Determined in Lab

cystic fibrosis, News

An ex vivo technique using nasal epithelial cells from a young girl carrying a rare mutation profile for cystic fibrosis (CF) was successful at predicting the efficacy of an approved ... Read more

April 12, 2021April 12, 2021

Respinova’s Pulsehaler Device Wins FDA OK

News

Respinova’s non-invasive Pulsehaler, a medical device meant to ease breathing in patients with airway restrictions, such as in cystic fibrosis (CF), has been cleared for marketing in the U.S. Pulsehaler ... Read more

April 9, 2021April 9, 2021

Phase 2 Trial of BX004, Phage Therapy for Bacterial Infections, Advancing

News

A Phase 2 clinical trial assessing the safety and efficacy of BX004 — BiomX’s phage therapy candidate for Pseudomonas aeruginosa infections in people with cystic fibrosis (CF) — remains on track to have ... Read more

April 8, 2021April 8, 2021

Trial Testing Personalized Chest Physiotherapy System for Mucus Clearance

cystic fibrosis, News

A clinical trial underway in Israel is investigating how well a personalized chest physiotherapy system compares with traditional airway clearance techniques in people with cystic fibrosis (CF) and other chronic lung ... Read more