I've learned that survival alone isn't the same as living Written by Jennifer Cogliano There is a version of me that exists only on paper: a list of diagnoses, a string of acronyms — CF, DIOS, CFRD, CKD3, DVT — that would mean nothing to a stranger and everything to the people who share them. At 55, I negotiate with joint pain every morning before getting out of bed, which determines what kind of day I’m going to have. Infection control never stops. Six years ago, I received

At a Glance Lipid nanoparticles that deliver engineered transfer RNA restored functional proteins in cell and animal models of cystic fibrosis. This strategy may represent a potential therapeutic approach for cystic fibrosis and other genetic diseases caused by nonsense mutations. Problems with the lungs, often caused by serious lung infections, are the most common cystic fibrosis complications. Cystic fibrosis is a genetic disorder that affects nearly 40,000 people in the U.

Ala K. Shaikhkhalil 1,*, Mutasim Abu-Hasan 2, Serena Sharpe 3 and Fadi Asfour 4,5

Trikafta benefits varied by genotype, prior treatment, and baseline lung function Written by Andrea Lobo, PhD Trikafta (elexacaftor/tezacaftor/ivacaftor) was associated with improved lung function and fewer pulmonary exacerbations, or sudden worsening of lung symptoms, in children ages 6 to 11 with cystic fibrosis (CF), a real-world study found. The treatment was also associated with improved nutritional status, fewer hospitalizations and antibiotic treatments, and reduced us

Many have questions about fertility, pregnancy, CF treatment effects Written by Patricia Inácio, PhD Most adults with cystic fibrosis (CF) surveyed at a U.S. care center had never received genetic counseling, and many had unanswered questions about fertility, pregnancy, and family planning. Among more than 100 respondents, 71% had not received genetic counseling, and 27% had never heard of it. Fifty-four percent of those who had not received counseling said they thought it wo

CFF-funded ICFTN training, MECFA MADI diagnostic donations, European CF registry participation, and Vertex free modulator access converge to bring comprehensive CF support to Pakistani patients for the first time. KARACHI / ISTANBUL / BOSTON — The Middle East Cystic Fibrosis Association (MECFA) and the Marmara University Cystic Fibrosis Center have completed a clinical assessment visit to the Indus Hospital and Health Network (IHHN) in Karachi, launching a structured CF capac

Researchers test a flexible sweat-sensing patch designed to make cystic fibrosis diagnosis more accessible. Editorial Illustration via AI By Lucia Carter About half the people with cystic fibrosis worldwide have never been diagnosed, by one widely cited estimate. Untreated, their life expectancy is under five years. In the United States, where the disease is caught early and treated, the projected median survival is 66 years. That gap is not primarily a knowledge problem. It

[8/21/2026] Today, the U.S. Food and Drug Administration published a new batch of draft product-specific guidances (PSGs) for developing generic drugs and generating evidence for abbreviated new drug applications (ANDAs). FDA publishes PSGs to help facilitate generic drug development, streamline ANDA assessment, and support greater access to generic drugs that are as safe and effective as their brand name counterparts and meet the same high-quality standards. Improving access

Study: Lung function in these patients tended to decline more during adolescence Written by Michela Luciano, PhD Developing cystic fibrosis (CF) during the first month of life may no longer necessarily predict poorer long-term outcomes, a new study from Portugal suggests. Despite experiencing substantial disease burden early in life, people whose signs of CF first manifested during the neonatal period had similar long-term nutritional outcomes and survival as those who did no

CAIRO - 15 August 2026: The Ministry of Health and Population announced that 792,592 newborns have been screened as part of the President's initiative for the early detection of genetic diseases, under the slogan “100 Million Healthy Lives,” since its launch on July 13, 2021. The initiative aims to build a healthy generation free from the causes of disability. Dr. Hossam Abdel Ghaffar, the Ministry's official spokesperson, explained that the initiative is currently in its