Cystic fibrosis scandal: Little Eve makes 65 roses in plea for life-saving drugs
A TODDLER with cystic fibrosis will deliver a bunch of 65 roses to Prime Minister Theresa May today, to plead for life-saving drugs to be available on the NHS. Eve Jones, one, was born with the cruel, deteriorating genetic condition, but wonder drug Orkambi could add decades to her life. (Source: Daily Express - Health)
Source: Daily Express - Health - May 16, 2019 Category: Consumer Health News Source Type: news

What does ‘Five Feet Apart’ get right and wrong about cystic fibrosis?
(Source: St. Michael's Hospital News and Media)
Source: St. Michael's Hospital News and Media - May 15, 2019 Category: Hospital Management Tags: Hospital News Source Type: news

Proteostasis Therapeutics Appoints Dr. Badrul Chowdhury, Former FDA Director of Pulmonology, Allergy, and Rheumatology, to Board of Directors
BOSTON, May 13, 2019 -- (Healthcare Sales & Marketing Network) -- Proteostasis Therapeutics, Inc. (NASDAQ:PTI), a clinical stage biopharmaceutical company dedicated to the discovery and development of groundbreaking therapies to treat cystic fibrosis (CF)... Biopharmaceuticals, Personnel Proteostasis Therapeutics, transmembrane conductance regulator, cystic fibrosis (Source: HSMN NewsFeed)
Source: HSMN NewsFeed - May 13, 2019 Category: Pharmaceuticals Source Type: news

2 young Canadian brothers, a life-threatening disease — and the harsh reality of drug prices
This week's story of two young Canadian brothers with cystic fibrosis reveals a bleak reality — only one has access to a promising new medication in a clinical trial, while a similar drug that could help his brother is too expensive. But access to the manufacturer's drugs is not just a problem in Canada. There are bitter fights in other jurisdictions over how much the company is charging. (Source: CBC | Health)
Source: CBC | Health - May 11, 2019 Category: Consumer Health News Tags: News/Health Source Type: news

Fighting for the drug that pauses cystic fibrosis
Orkambi is a drug that targets a mutation that around 50% of people with cystic fibrosis in the UK have. (Source: BBC News | Health | UK Edition)
Source: BBC News | Health | UK Edition - May 11, 2019 Category: Consumer Health News Source Type: news

FDA Panel Recommends Mannitol Inhalation Powder for CF FDA Panel Recommends Mannitol Inhalation Powder for CF
An FDA panel voted 9 to 7 to recommend mannitol inhalation powder (Bronchitol, Chiesi) for improvement of pulmonary function in adults with cystic fibrosis, along with standard therapies.Medscape Medical News (Source: Medscape Medical News Headlines)
Source: Medscape Medical News Headlines - May 9, 2019 Category: Consumer Health News Tags: Pulmonary Medicine News Source Type: news

Genetically modified virus saves teen's life, offers hope in fight against antibiotic resistance
Isabelle Carnell-Holdaway, 17, has faced not one but two unrelenting threats to her life. Diagnosed at 11 months of age with cystic fibrosis, the progressive genetic disease that causes lung infections and breathing impairment, Isabelle has also combated an on-again, off-again infection caused by antibiotic-resistant bacteria since age 8. (Source: CNN.com - Health)
Source: CNN.com - Health - May 9, 2019 Category: Consumer Health News Source Type: news

Virus cocktail saves the life of dying girl amid hopes of breakthrough in fight against superbugs 
Isabelle Carnell-Holdaway, of Faversham, Kent, received a double lung transplant aged 17 to treat cystic fibrosis. But afterwards a drug-resistant superbug took hold of the teenager. (Source: the Mail online | Health)
Source: the Mail online | Health - May 9, 2019 Category: Consumer Health News Source Type: news

Cystic fibrosis sufferer had a DOUBLE lung transplant aged 22
Emma Khanahmadi, of Sweden, now 25, was diagnosed with CF at the age of eight. She received a donor when she was 'just surviving' and is now thriving. (Source: the Mail online | Health)
Source: the Mail online | Health - May 2, 2019 Category: Consumer Health News Source Type: news

Researcher gets $3.3 million grant to develop universal treatment for cystic fibrosis
(Oregon State University) A pharmaceutical sciences researcher has received a five-year, $3.3 million grant from the National Institutes of Health to develop a way for cystic fibrosis patients to get molecular treatment via an inhaler. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - April 30, 2019 Category: International Medicine & Public Health Source Type: news

FDA Approves Kalydeco (ivacaftor) as First and Only CFTR Modulator to Treat Eligible Infants with CF as Early as Six Months of Age
BOSTON--(BUSINESS WIRE)--Apr. 30, 2019-- Vertex Pharmaceuticals Incorporated (Nasdaq:VRTX) today announced the U.S. Food and Drug Administration (FDA) approved Kalydeco (ivacaftor) for use in children with cystic fibrosis (CF) ages six months to... (Source: Drugs.com - New Drug Approvals)
Source: Drugs.com - New Drug Approvals - April 30, 2019 Category: Drugs & Pharmacology Source Type: news

Gene editing could cure cystic fibrosis before birth, study suggests
Scientists at the University of Pennsylvania successfully edited the DNA of embryonic mice just days before birth to get rid of genetic defects that cause fatal lung diseases. (Source: the Mail online | Health)
Source: the Mail online | Health - April 18, 2019 Category: Consumer Health News Source Type: news

Cystic fibrosis sufferer who had double lung transplant contracted a virus from her donor 
Rima Manomaitis, 29, from Pepperell, Massachusetts, received a double lung transplant in May 2017 to treat her cystic fibrosis, only to learn her donor had a dormant virus that had become active. (Source: the Mail online | Health)
Source: the Mail online | Health - April 17, 2019 Category: Consumer Health News Source Type: news

Bacteria-infecting viruses exacerbate chronic infections in cystic fibrosis
(American Association for the Advancement of Science) A study of samples from 92 patients with cystic fibrosis (CF) has revealed that certain bacteriophages -- viruses that infect bacteria -- worsen the severity of bacterial infections associated with the disorder. (Source: EurekAlert! - Infectious and Emerging Diseases)
Source: EurekAlert! - Infectious and Emerging Diseases - April 17, 2019 Category: Infectious Diseases Source Type: news

New test could lead to personalized treatments for cystic fibrosis
The test combines high-speed video microscopy with a novel video analysis algorithm to measure the coordinated movement of cilia in the lungs. (Source: Yale Science and Health News)
Source: Yale Science and Health News - April 16, 2019 Category: Universities & Medical Training Source Type: news

Medical News Today: Common virus could speed up cystic fibrosis
New research finds that a virus that lies dormant in most of us can accelerate disease progression in people with cystic fibrosis. (Source: Health News from Medical News Today)
Source: Health News from Medical News Today - April 15, 2019 Category: Consumer Health News Tags: Cystic Fibrosis Source Type: news

Cytomegalovirus Linked to Faster Progression of Cystic Fibrosis
Faster progression to end - stage lung disease observed among patients with CMV IgG positivity (Source: Pulmonary Medicine News - Doctors Lounge)
Source: Pulmonary Medicine News - Doctors Lounge - April 11, 2019 Category: Respiratory Medicine Tags: Infections, Pulmonology, Journal, Source Type: news

Cytomegalovirus Linked to Faster Progression of Cystic Fibrosis
THURSDAY, April 11, 2019 -- For patients with cystic fibrosis (CF), cytomegalovirus (CMV) is associated with faster disease progression, according to a research letter published online April 7 in the European Respiratory Journal. Michael D. Parkins,... (Source: Drugs.com - Pharma News)
Source: Drugs.com - Pharma News - April 11, 2019 Category: Pharmaceuticals Source Type: news

Health Tip: Understanding Cystic Fibrosis
(Source: Pulmonary Medicine News - Doctors Lounge)
Source: Pulmonary Medicine News - Doctors Lounge - April 9, 2019 Category: Respiratory Medicine Tags: Pulmonology, FYI, Source Type: news

Health Tip: Understanding Cystic Fibrosis
-- Cystic fibrosis (CF) is a genetic condition that causes a bodily protein to malfunction. The faulty protein affects cells, tissues and glands. People with CF make thick mucus that can block, damage and infect organs. Symptoms vary, depending on... (Source: Drugs.com - Daily MedNews)
Source: Drugs.com - Daily MedNews - April 9, 2019 Category: General Medicine Source Type: news

Health Tip: Understanding Cystic Fibrosis
Title: Health Tip: Understanding Cystic FibrosisCategory: Health NewsCreated: 4/9/2019 12:00:00 AMLast Editorial Review: 4/9/2019 12:00:00 AM (Source: MedicineNet Lungs General)
Source: MedicineNet Lungs General - April 9, 2019 Category: Respiratory Medicine Source Type: news

Common virus linked to faster disease progression in cystic fibrosis
(European Lung Foundation) A new study has found that cystic fibrosis patients who have a common virus may experience faster disease progression than patients who do not have the virus. Signs of faster cystic fibrosis disease progression included earlier times to lung transplant referral and reaching the final stages of the disease. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - April 7, 2019 Category: International Medicine & Public Health Source Type: news

Amphotericin B Makes Path for Lung Defense in Cystic Fibrosis Amphotericin B Makes Path for Lung Defense in Cystic Fibrosis
Amphotericin B treatment may be able to restore the infection-fighting properties of the lungs in cystic fibrosis by standing in for a missing or deficient protein channel, studies in pigs and in human lung tissue suggest.Reuters Health Information (Source: Medscape Pathology Headlines)
Source: Medscape Pathology Headlines - March 28, 2019 Category: Pathology Tags: Pulmonary Medicine News Source Type: news

Tackling cystic fibrosis in the womb
(Source: ScienceNOW)
Source: ScienceNOW - March 28, 2019 Category: Science Authors: Maroso, M. Tags: twis Source Type: news

600 years ’ supply of cystic fibrosis drug destroyed in price row
8,000 packs of Orkambi go out of date during standoff between maker and NHSNearly 8,000 packs of Orkambi, the breakthrough medicine for cystic fibrosis, have been destroyed by the manufacturer while it has been in a stand-off with the NHS over the high price it wants to charge for the drug.The US company Vertex has distributed 80,000 packs of Orkambi around Europe from its base in the UK since the drug was licensed in 2015. Other European countries with smaller numbers of people affected by the genetic disease have agreed to a high price, sometimes in order to give access to patients before negotiating downwards.Continue r...
Source: Guardian Unlimited Science - March 27, 2019 Category: Science Authors: Sarah Boseley Health editor Tags: Cystic fibrosis Society NHS Health Drugs Science UK news Source Type: news

Synspira Therapeutics Announces Appointment of Robert Gallotto as President and Chief Executive Officer
Former President of Alcresta Therapeutics brings development, operational and strategic leadership experience as Synspira builds product pipeline Synspira's lead product targeting cystic fibrosis and other pulmonary diseases, SNSP113, to enter Phase 2 C... Biopharmaceuticals, Personnel Synspira Therapeutics, cystic fibrosis (Source: HSMN NewsFeed)
Source: HSMN NewsFeed - March 27, 2019 Category: Pharmaceuticals Source Type: news

Replacing function of impaired cystic fibrosis protein
A widely-used antifungal drug replaced the function of the mutated protein that causes cystic fibrosis in human lung cells grown in the lab, suggesting a potential therapy. (Source: NIH Research Matters from the National Institutes of Health (NIH))
Source: NIH Research Matters from the National Institutes of Health (NIH) - March 26, 2019 Category: Consumer Health News Source Type: news

Proteostatis stock plunges on cystic fibrosis triple combo data
Shares of Boston biotech Proteostasis Therapeutics Inc. sank roughly 60 percent Monday after the company released new data for its triple combination cystic fibrosis treatment that puts it behind competitor Vertex Pharmaceuticals. Pre-commercial company Proteostasis (Nasdaq: PTI) is hoping to gain a foothold in the cystic fibrosis field, which is currently dominated by Vertex (Nasdaq: VRTX). It is currently developing a handful of drugs for the rare lung disorder, including a combination of its… (Source: bizjournals.com Health Care:Pharmaceuticals headlines)
Source: bizjournals.com Health Care:Pharmaceuticals headlines - March 25, 2019 Category: Pharmaceuticals Authors: Allison DeAngelis Source Type: news

Posaconazole has better therapeutic efficacy in comparison with itraconazole and voriconazole in ABPA amongst Cystic Fibrosis patients
Mon, 03/25/2019 - 13:54News blog (Source: The Aspergillus Website - updates)
Source: The Aspergillus Website - updates - March 25, 2019 Category: Respiratory Medicine Authors: helenfindon Source Type: news

Cystic Fibrosis movie on lovers who must stay Five Feet Apart sparks debate
A NEW film portraying a courtship between two young patients with cystic fibrosis has started a debate among medics and charities. (Source: Daily Express - Health)
Source: Daily Express - Health - March 24, 2019 Category: Consumer Health News Source Type: news

Medical News Today: Cystic fibrosis: Existing drug may improve lung function
According to a recent study, a commonly used antifungal medication could be useful for treating lung infections related to cystic fibrosis. (Source: Health News from Medical News Today)
Source: Health News from Medical News Today - March 24, 2019 Category: Consumer Health News Tags: Cystic Fibrosis Source Type: news

Cystic Fibrosis: How Gunnar Esiason Is Making A Difference
Cystic Fibrosis (CF) is a fatal and progressive genetic disorder that affects the lungs and pancreas. It results in persistent lung infections--due to production of thick mucous--which also impair the ability to breathe. I recently spoke with Gunnar Esiason, a CF advocate and patient. (Source: Forbes.com Healthcare News)
Source: Forbes.com Healthcare News - March 22, 2019 Category: Pharmaceuticals Authors: Robert Glatter, MD, Contributor Source Type: news

The Kidney Cancer Association Appoints Kendall Monroe as CAO
HOUSTON– March 19, 2019– The Kidney Cancer Association (KCA) is pleased to announce that Kendall Monroe has joined the organization as its first Chief Advancement Officer (CAO). Monroe brings more than a decade of experience in development, fundraising and donor relations. Monroe most recently worked as the director of planned giving and board management with the University of St. Thomas. She previously held several positions within MD Anderson Cancer Center - including assistant director of development, associate director of development and director of trusts, estates and gift planning. Additional roles i...
Source: Kidney Cancer Association - March 21, 2019 Category: Urology & Nephrology Source Type: news

Screening for Colorectal Cancer in Cystic Fibrosis Screening for Colorectal Cancer in Cystic Fibrosis
Dr David Johnson on recent recommendations that notably shift the age range for who should be screened and how often.Medscape Gastroenterology (Source: Medscape Gastroenterology Headlines)
Source: Medscape Gastroenterology Headlines - March 20, 2019 Category: Gastroenterology Tags: Gastroenterology Commentary Source Type: news

"Five Feet Apart" and memoir paint complicated portrait of cystic fibrosis
On the "CBS This Morning" Podcast, director Justin Baldoni shares the inspiration behind the film (Source: Health News: CBSNews.com)
Source: Health News: CBSNews.com - March 19, 2019 Category: Consumer Health News Source Type: news

Cystic fibrosis community claps back at Five Feet Apart romance flick
Five Feet Apart, debuting Friday, is a fictional film about two teens with cystic fibrosis that fall in love, but can't touch without endangering one another. The film and its ads have drawn criticism. (Source: the Mail online | Health)
Source: the Mail online | Health - March 15, 2019 Category: Consumer Health News Source Type: news

Cystic Fibrosis scandal: TV star Cameron Hutchinson says thousands in dire need of drug
A television star with cystic fibrosis is praying Vertex agrees a deal with the NHS next week as he desperately needs Orkambi now. Actor Cameron Hutchinson, 27, said his quality of life had taken "a significant drop" in the past two years and his work had suffered. (Source: Daily Express - Health)
Source: Daily Express - Health - March 14, 2019 Category: Consumer Health News Source Type: news

Brother and sister with cystic fibrosis can't share each other's toys because it could KILL them
People with cystic fibrosis should be kept apart as their bacteria can be harmful to each other. Sienna Woods, two, and Noah Woods, one, from Lancashire, are unable to kiss each other. (Source: the Mail online | Health)
Source: the Mail online | Health - March 14, 2019 Category: Consumer Health News Source Type: news

Scientists find new approach that shows promise for treating cystic fibrosis
NIH-funded discovery uses common antifungal drug to improve lungs ’ ability to fight infection. (Source: National Institutes of Health (NIH) News Releases)
Source: National Institutes of Health (NIH) News Releases - March 13, 2019 Category: American Health Source Type: news

Heart-wrenching memoir of woman who died of cystic fibrosis and a superbug
Mallory Smith died of a superbug that infected her cystic fibrosis-ridden lungs at just 25. Her posthumous memoir, Salt in My Soul, reveals the young woman's struggle to not just survive, but thrive. (Source: the Mail online | Health)
Source: the Mail online | Health - March 12, 2019 Category: Consumer Health News Source Type: news

Posaconazole has better therapeutic efficacy in comparison with itraconazole and voriconazole in ABPA amongst Cystic Fibrosis patients
Tue, 03/12/2019 - 11:22News blog (Source: The Aspergillus Website - updates)
Source: The Aspergillus Website - updates - March 12, 2019 Category: Respiratory Medicine Authors: helenfindon Source Type: news

Proteostasis Therapeutics Appoints David Arkowitz to Board of Directors
BOSTON, March 7, 2019 -- (Healthcare Sales & Marketing Network) -- Proteostasis Therapeutics, Inc. (NASDAQ: PTI), a clinical stage biopharmaceutical company dedicated to the discovery and development of groundbreaking therapies to treat cystic fibrosis (C... Biopharmaceuticals, Personnel Proteostasis Therapeutics, transmembrane conductance regulator, cystic fibrosis (Source: HSMN NewsFeed)
Source: HSMN NewsFeed - March 7, 2019 Category: Pharmaceuticals Source Type: news

Vertex cystic fibrosis triple combo therapy succeeds in important trials
Vertex Pharmaceuticals Inc on Wednesday said its triple-combination treatment for cystic fibrosis led to significant lung function improvement in two late-stage studies, paving the way for a therapy that could eventually address 90 percent of people with the life-shortening genetic condition. (Source: Reuters: Health)
Source: Reuters: Health - March 6, 2019 Category: Consumer Health News Tags: healthNews Source Type: news

Vertex's cystic fibrosis therapy meets goal of late-stage studies
Vertex Pharmaceuticals Inc said on Wednesday its triple-combination therapy showed improvement in lung function for people with cystic fibrosis (CF) in two late-stage studies. (Source: Reuters: Health)
Source: Reuters: Health - March 6, 2019 Category: Consumer Health News Tags: healthNews Source Type: news

Researchers find window of opportunity for treatment of early cystic fibrosis lung infections
(Technical University of Denmark) New research from DTU Biosustain and Rigshospitalet suggests that disease-causing microbes in young cystic fibrosis (CF) patients change rapidly within two to three years after first infection. This knowledge could lead to better treatment strategies to avoid persistent infections. (Source: EurekAlert! - Infectious and Emerging Diseases)
Source: EurekAlert! - Infectious and Emerging Diseases - March 4, 2019 Category: Infectious Diseases Source Type: news

Plea for NHS to give grandson wonderdrug after HEARTBREAKING cystic fibrosis diagnosis
A COUPLE stricken by cystic fibrosis tragedy and the loss of two sons have pleaded with NHS chiefs to secure Orkambi - as their young grandchild now battles the cruel condition. (Source: Daily Express - Health)
Source: Daily Express - Health - February 26, 2019 Category: Consumer Health News Source Type: news

Daily Express crusade: Sign the petition - NHS must negotiate URGENT deal with Vertex
THE DAILY Express and cystic fibrosis campaigners are urging the public to sign a petition, demanding NHS England negotiate an urgent deal with Vertex. (Source: Daily Express - Health)
Source: Daily Express - Health - February 26, 2019 Category: Consumer Health News Source Type: news

Correct antibiotic dosing could preserve lung microbial diversity in cystic fibrosis
(Children's National Health System) Children and young adults with cystic fibrosis whose lung infections were treated with suboptimal doses of antibiotics had fewer changes in lung microbial diversity during the IV treatment, and their microbial diversity levels were higher 30 days later, a multi-institutional study that includes Children's researchers shows. (Source: EurekAlert! - Infectious and Emerging Diseases)
Source: EurekAlert! - Infectious and Emerging Diseases - February 22, 2019 Category: Infectious Diseases Source Type: news

Schoolboy, 8, ‘living with a death sentence’ because NHS won’t fund cystic fibrosis ‘wonder drug’
George Monckton, from West Midlands, could be saved from lung deterioration by Orkambi. It is unavailable on the NHS due to a deadlock on a price deal with US manufacturers Vertex. (Source: the Mail online | Health)
Source: the Mail online | Health - February 20, 2019 Category: Consumer Health News Source Type: news

Cystic Fibrosis scandal: UK waits for wonder drug to save children's lives
THE parents of a little girl with cystic fibrosis have revealed their daily battle to keep her healthy as they wait for life-saving drug Orkambi (Source: Daily Express - Health)
Source: Daily Express - Health - February 19, 2019 Category: Consumer Health News Source Type: news