Vertex Pharmaceuticals Incorporated announced it has awarded the company's 2016 Cystic Fibrosis (CF) Circle of Care grants, totalling approximately $1 million, to 18 non-profit medical, academic, patient and community organisations. In its second year, the grants fund innovative programmes to help the cystic fibrosis community.

CF is a rare, life-threatening genetic disease affecting approximately 75,000 people in North America, Europe and Australia. CF is caused by a defective or missing cystic fibrosis transmembrane conductance regulator (CFTR) protein resulting from mutations in the CFTR gene. Children must inherit two defective CFTR genes — one from each parent — to have CF. There are approximately 2,000 known mutations in the CFTR gene. Some of these mutations, which can be determined by a genetic, or genotyping test, lead to CF by creating non-working or too few CFTR protein at the cell surface. The defective function or absence of CFTR proteins in people with CF results in poor flow of salt and water into and out of the cell in a number of organs. In the lungs, this leads to the buildup of abnormally thick, sticky mucus that can cause chronic lung infections and progressive lung damage in many patients that eventually leads to death. The median age of death is in the mid-to-late 20s.

Despite improvements in the treatment of CF, physical and emotional support for patients and caregivers is a continuing need. Vertex's Cystic Fibrosis Circle of Care initiative promotes collaboration and provides funding to non-profits that can enhance care and resources for people with CF.

During this year's process, 58 proposals were received from organisations in 15 countries - a 15 per cent increase in total applicants since last year. Ultimately 18 projects from Australia, Austria, Belgium, Canada, Czech Republic, France, Germany, the Netherlands and the United States were selected by a multidisciplinary group of internal and independent experts, including a CF nurse, pulmonologist and parent of a CF patient.

The organisations and projects selected met at least one of the following goals: Help people with CF live a fuller, more engaged lifestyle; Address the psychological and social challenges CF patients face; Improve overall support to family and caregivers;

Provide tools that help CF patients take more ownership of their healthcare needs; and Educate CF patients on topics including lifestyle transitions, adherence and navigating new environments.

"We are making tremendous advancements in treating the underlying cause of cystic fibrosis for many people living with the disease, but our commitment to CF goes beyond new medicines," said Jeffrey Leiden, M.D., Ph.D., chairman, president and chief executive officer of Vertex. "We're proud to support these 18 organizations in their efforts to enhance care and resources for the day-to-day management of CF and the physical and emotional challenges patients and their families experience."

Grant recipients will present their work at a Circle of Care forum in October 2016, prior to the commencement of the North American Cystic Fibrosis Conference (NACFC). Projects presented at last year's meeting covered a wide variety of innovative and patient-centric initiatives including the development of a smartphone-based tool for adolescents to improve self-management of CF, implementation of a program to screen for anxiety and depression in paediatric and adult CF centers and a virtual education program for people living with CF and their caregivers. The forum provided an opportunity for the awardees to meet and exchange contact information and submit a collaborative proposal for consideration to the second annual Cystic Fibrosis Circle of Care program.

One of last year's grant recipients, Cystic Fibrosis Research, Inc. (CFRI), a non-profit that spreads awareness of cystic fibrosis and provides educational and personal support, is participating for the second year in both a collaborative initiative and standalone project. They will focus on increasing adherence, advocacy and awareness among the CF community.

"Initiatives like Vertex's Cystic Fibrosis Circle of Care grants are important for the CF community because they enable the development and delivery of innovative programs and services that have a direct impact on this medically fragile community," said Sue Landgraf, executive director of Cystic Fibrosis Research, Inc. "These grants make it possible for patient advocacy agencies, like CFRI, to think outside the box of standard programs and create initiatives that not only benefit those diagnosed with CF, but also educate the general public and raise awareness about the rare, life-shortening genetic disease."