Cystic Fibrosis News Today Weekly Digest

Cystic Fibrosis Weekly Update Contents: The Burden of Care in the Life of a CF Patient Personalized Nutrition Programs May Help Improve Outcomes for CF Patients, Survey Suggests CF Foundation Gives $4.5M to Expedite Talee Bio’s Development of Two Gene Therapy Candidates Making Dreams Come True in Uncertain Times European Research Team Granted €6.8M to Develop Non-viral Gene Therapy System The Burden of Care in the Life of a CF Patient Jan 28, 2019 09:00 am | Tré LaRosa A couple of months ago, I did back-of-the-envelope calculations on basic CF stats. Here’s what I asked: In a year, how much time do I spend doing treatments? How many pills do I take? As I wrote last week, the spectrum of CF presentation is about as diverse as the number of patients in the […] The post The Burden of Care in the Life of a CF Patient appeared first on Cystic Fibrosis News Today. Read More Personalized Nutrition Programs May Help Improve Outcomes for CF Patients, Survey Suggests Jan 28, 2019 07:00 am | Alice Melão New personalized strategies that can address the nutritional needs of cystic fibrosis patients may provide the best care and improve patient outcomes, a study suggests. The study, “A survey identifying nutritional needs in a contemporary adult cystic fibrosis cohort,” was published in the journal BMC Nutrition. CF is mainly known for its progressive respiratory symptoms. […] The post Personalized Nutrition Programs May Help Improve Outcomes for CF Patients, Survey Suggests appeared first on Cystic Fibrosis News Today. Read More CF Foundation Gives $4.5M to Expedite Talee Bio’s Development of Two Gene Therapy Candidates Jan 25, 2019 07:00 am | Iqra Mumal The Cystic Fibrosis Foundation (CFF) will fund the preclinical development of two gene therapy candidates, Talee Bio’s TL-101 and TL-102, for the treatment of cystic fibrosis (CF), the company announced. Talee will receive up to $4.5 million from CFF to help accelerate the development of both these gene therapies for all CF patients, particularly for those […] The post CF Foundation Gives $4.5M to Expedite Talee Bio’s Development of Two Gene Therapy Candidates appeared first on Cystic Fibrosis News Today. Read More Making Dreams Come True in Uncertain Times Jan 24, 2019 09:00 am | Elly Aylwin-Foster Last week, I introduced this column to share my experiences while working with cystic fibrosis (CF): the highs, the lows, the mid-meeting IVs — those kinds of things. In this column, I want to focus on the future; specifically, the dreams that I have of my future. Big dreams got me to where I am. […] The post Making Dreams Come True in Uncertain Times appeared first on Cystic Fibrosis News Today. Read More European Research Team Granted €6.8M to Develop Non-viral Gene Therapy System Jan 24, 2019 07:00 am | Alice Melão The Horizon 2020 research and innovation program of the European Union granted €6.8 million (approximately $7.7 million) to an international research team for the development of non-viral gene delivery technology. This new gene therapy strategy has the potential to improve the health of patients with genetic diseases worldwide, including those with cystic fibrosis, Huntington’s disease, and […] The post European Research Team Granted €6.8M to Develop Non-viral Gene Therapy Systemappeared first on Cystic Fibrosis News Today. Read More   Recent News Orkambi Approved in Europe for Younger CF Patients with F508del Mutations What Storm Drain Adventures Taught Me About CF Treatments CF Patients Navigate Increasingly Complex Health Insurance Quagmire Woman’s Lawsuit Put Emphasis on ‘Urgency’ in Deciding Organ Transplants in US The Diverse Spectrum of Health Across the CF Community