miércoles, 30 de enero de 2019

Cystic Fibrosis News Today Weekly Digest


Cystic Fibrosis Weekly Update

Contents:

The Burden of Care in the Life of a CF Patient

Jan 28, 2019 09:00 am | Tré LaRosa



burdenA 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 […]
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Personalized Nutrition Programs May Help Improve Outcomes for CF Patients, Survey Suggests

Jan 28, 2019 07:00 am | Alice Melão



nutrition survey, CFNew 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. […]
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CF Foundation Gives $4.5M to Expedite Talee Bio’s Development of Two Gene Therapy Candidates

Jan 25, 2019 07:00 am | Iqra Mumal



CFF, gene therapy fundingThe 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 […]
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Making Dreams Come True in Uncertain Times

Jan 24, 2019 09:00 am | Elly Aylwin-Foster



dreamsLast 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. […]
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European Research Team Granted €6.8M to Develop Non-viral Gene Therapy System

Jan 24, 2019 07:00 am | Alice Melão



ENDOSCAPE project Horizon 2020The 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 […]
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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

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