News

Flares, Poorer Lung Health Can Follow Becoming a Parent With CF

People with mild-to-moderate cystic fibrosis (CF) commonly experience a decline in lung function and an uptick in exacerbations shortly after becoming parents, a study reports. The use of CFTR modulator therapy can lessen the negative health impacts of newfound parenthood, findings also suggest. Its authors called for more research…

Telerehabilitation May Help Children Feel Less Anxious

Telerehabilitation — the delivery of rehabilitation care from a distance using technology — may make children with cystic fibrosis (CF) feel less anxious or depressed, have a more positive body image, and also improve their ability to walk farther, a small study found. However, the levels of anxiety and…

American Airlines Event Raises $1.2M for CF Foundation

American Airlines and its partners recently raised $1.2 million to support the Cystic Fibrosis Foundation during its 37th annual American Airlines Celebrity Ski event. In 37 years the event has raised more than $44 million supporting research to find a cure for CF. “For nearly 40 years, American Airlines…

CFTruths Campaign Highlights Challenges of Daily Living

The U.K. Cystic Fibrosis Trust has launched the CFTruths campaign, which is designed to enhance public awareness and understanding of cystic fibrosis (CF) and how patients routinely take precautions that now are associated mainly with preventing COVID-19. CFTruths comes on the heels of a YouGov poll organized by the Trust,…

#RAREis Representation Program Promotes Equity, Diversity

Horizon Therapeutics has launched its #RAREis Representation program aimed at increasing diversity, equity, and inclusion among patients with rare diseases. There are about 400 million people worldwide living with a rare disease; for many of them, access to diagnosis, care, and treatments can be challenging. Accessing better care depends on…

Emily’s Entourage Grant Targets Nonsense Mutations

The nonprofit Emily’s Entourage has awarded $440,000 in funding to support two projects aimed at advancing cystic fibrosis (CF) research. “These grants reflect Emily’s Entourage’s unwavering commitment to advance lifesaving research to fill critical unmet needs and expeditiously pursue promising therapeutic opportunities for the CF community, especially those that…

Canadian Report Shows Promising Trends in CF Health

Cystic Fibrosis Canada’s 2020 annual data report from the Canadian Cystic Fibrosis Registry has been released, and it shows several improvements in the health of people with cystic fibrosis (CF), and a limited impact of the COVID-19 pandemic on health outcomes. “The Canadian Cystic Fibrosis Registry has…