Mary Chapman, features writer —

The Cystic Fibrosis Foundation (CFF) is sponsoring free access to Beam, an online exercise platform that provides a variety of live and on-demand classes tailored for people with cystic fibrosis (CF), through Labor Day, Sept. 7. Complimentary registration through Beam’s website is available to adults with CF in the…

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to…

Vertex Pharmaceuticals is “highly confident” that it can continue to supply its approved cystic fibrosis (CF) therapies to patients worldwide, but expects at least some of its ongoing and planned clinical trials to be affected by the COVID-19 pandemic. Among likely changes to ongoing trials well into the dosing of patients — including…

A video game aimed at encouraging young cystic fibrosis (CF) patients to do their breathing exercises is being tested at Great Ormond Street Hospital in London and other sites across the U.K. Konglomerate Games, a company comprised of fourth-year students from Abertay University in Scotland, developed…

Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, and aims to supports work by researchers and clinicians into a better understanding of and treatments for rare diseases, as well…

An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

Trikafta, a recently approved treatment for cystic fibrosis (CF), is now available through the U.S. home delivery and specialty pharmacy AllianceRx Walgreens Prime, as part of its limited distribution therapeutic offerings. Trikafta is a next-generation combination of three CF medications: elexacaftor, tezacaftor, and ivacaftor.

To heighten cystic fibrosis (CF) awareness and raise funds for research, care and advocacy, Cystic Fibrosis Canada (CFC) has launched its fourth annual year-end campaign. This year’s effort, which began Nov. 28 and runs through Dec. 31, is called “Wish.” The nonprofit will also match all pledges up to…

The University of Queensland (UQ), in Australia, has launched its Queensland Cystic Fibrosis Research Program with a goal of improving the life of people with this disease. This research program is supported by $15 million donation put together by several sources: the Cystic Fibrosis Foundation in the U.S., and in Australia, UQ…

Through a new partnership with the Cystic Fibrosis Foundation (CFF), California-based winery Tarpon Cellars will donate $1 to the organization’s Georgia chapter for each bottle of wine sold. The funds will help support research and treatment development for cystic fibrosis (CF), an inheritable…