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…
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Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by signing up their patient communities and connecting with researchers. Eric Sid, MD, program officer for the Office of Rare Diseases Research (ORDR), said it is difficult to estimate how…
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…
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,…
Kalydeco (ivacaftor) therapy, given before age 1, was shown to normalize sweat chloride levels, and improve growth and lung and pancreas function in two baby boys with cystic fibrosis (CF), a case study reported. According to the researchers, these results show that Kalydeco “seems to be safe and…
The Cystic Fibrosis Foundation has invested $1 million in Felix Biotechnology to support the company’s efforts to develop a phage-based therapy as an alternative to antibiotics in controlling Pseudomonas aeruginosa infections in people with cystic fibrosis (CF). “We are incredibly honored and excited to receive this support from the CF…
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…
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…
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…
Bionews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper dive into what it’s like to live with a rare disease, including conversations about advocacy, mental health, survivor’s guilt, treatment of minority patients, and more. The Monday event, “A…
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