I Keep Forgetting CF Is Invisible
I often hear, “CF does not define me.” However, while cystic fibrosis (CF) does not define me, it is a part of me. It ... Read more
Updates
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Columns, Path Unknown - a Column by Wendy Caroline I Keep Forgetting CF Is Invisible
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Columns, Mutations & Conversations - a Column by Tré LaRosa Reflecting on My Favorite Columns of 2019
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cystic fibrosis, News CF Advocate Andy Lipman Offers Hope to Others With Warrior Project
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Becoming Visible by Elizabeth Rogers, Columns I Let CF Win When I Gave Up My Veterinarian Dream
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cystic fibrosis, News Two Pivotal Phase 3 Trials of Proteostasis’ CF Triple Combo Therapy to Open in 2020
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Columns, Work that Works - a Column by Elly Aylwin-Foster I’m Taking a Break from Sharing My Story
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cystic fibrosis, News Organ Care System Used at Florida Hospital Expected to Make More Lungs Suitable for Transplant
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cystic fibrosis, News Approaches Like Yoga, Along with Meds, Key to Managing CF Pain, Experts Say
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cystic fibrosis, News Trikafta Will Be ‘Life-Transforming,’ Especially for Younger CF Patients, Researchers Say
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cystic fibrosis CF Carriers at Increased Risk for Disease-related Conditions, Study Reports
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cystic fibrosis, News New CEO Michael Boyle Outlines ‘Cure, Care, Community’ Priorities for CFF
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cystic fibrosis, News New CF Treatment Trikafta Now Available Through AllianceRx Walgreens Prime
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cystic fibrosis, News Antabio Awarded $4.4M for Continued Research for P. aeruginosa Lung Infection Therapy
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Columns, Life in the Grey: a Column by Bailey Anne Vincent I Want to Quit the Internet
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Columns, Victorious - a Column by Brad Dell Side Effects Leave Me Salvaging Social Shards
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cystic fibrosis, News Don’t Overlook Importance of Sleep Hygiene, CF Experts Advise
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Columns, Path Unknown - a Column by Wendy Caroline A Few Words for Those I Let Down in 2019
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Columns, Mutations & Conversations - a Column by Tré LaRosa My Thoughts on How to Build a Better World
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cystic fibrosis, News Gene Variations May Explain Resistance to Lung Infections in Some CF Patients, Study Says
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cystic fibrosis, News CFF Programs Strive to Reduce Patients’ Isolation
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News Chronic Kidney Disease Highly Prevalent in CF, Kidney Function Poorer in Transplanted Patients, Italian Study Says
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cystic fibrosis, News Proteostasis’ Triple Combo Improves Lung Function in CF Patients, Phase 2 Trial Shows
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cystic fibrosis Vertex and Republic of Ireland Reach Agreement on Reimbursement for Triple Combination Therapy
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Columns, Life in the Grey: a Column by Bailey Anne Vincent Here’s How I’m Failing to Support the Mental Health Community
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cystic fibrosis CF Newborn Screening Improves Weight and Lung Outcomes, but Has No Impact on Social Inequalities, Study Suggests
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News Diet to Help Manage Glucose in CF Patients: A Nutritionist’s View
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Columns, Mutations & Conversations - a Column by Tré LaRosa My CF Is My Burden Alone
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cystic fibrosis, News Proteostasis to Test Personalized Treatment with Novel CFTR Modulators in Europe
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Columns, Las Cosas de la Vida - a Column by Luisa Palazola I’m Sharing My Friend’s Story with Hope of a Triple-organ Transplant
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cystic fibrosis, News CFF Offers Emotional Send-off to Retiring CEO Preston Campbell
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cystic fibrosis, News European Commission Approves Kalydeco for Children as Young as Six Months
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Columns, Life in the Grey: a Column by Bailey Anne Vincent Confessions from the 10 Percent: Life Without Trikafta
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cystic fibrosis Gene Therapy Takes Center Stage at 2019 NORD Summit
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cystic fibrosis, News Kalydeco Improves Lung Function in Patient Carrying Responsive and Non-responsive Mutations, Case Study Reports
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Columns, Mutations & Conversations - a Column by Tré LaRosa We Must Build a Diverse Coalition Within the CF Community
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cystic fibrosis Copeptin a Potential Biomarker of Symptom Severity During Pulmonary Exacerbation, Study Shows
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cystic fibrosis, News Quebec Loans Laurent $2.7M to Finance Trial Testing Oral LAU-7b in All CF Types
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News HHS Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases
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cystic fibrosis, News Israeli, US Researchers Develop New Device to Eliminate Mucus Secretion from Obstructed Airways
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cystic fibrosis, News Cystic Fibrosis Canada Opens Holiday ‘Wish’ Fundraising Campaign
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Columns, Life in the Grey: a Column by Bailey Anne Vincent Casting Call: Sickly Leading Ladies Wanted
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Columns, Victorious - a Column by Brad Dell I Am Proud to Be Youthful
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cystic fibrosis, News Elexacaftor Triple Combo Improves Lung Function and Quality of Life in CF Patients, Phase 3 Trial Shows
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cystic fibrosis, News CFF Strives to Improve Lung Transplant Journey for Cystic Fibrosis Patients
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cystic fibrosis, News IGF2R Blood Levels May Help Predict Antibiotic Response in CF Pulmonary Exacerbations, Study Says
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Columns, Life in the Grey: a Column by Bailey Anne Vincent Temper Tantrums Aren’t on My To-do List
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Columns, Victorious - a Column by Brad Dell Fear of Abandonment Has Driven My Life into the Ground
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cystic fibrosis Researchers Discover Stress Response Mechanism that Allows Pseudomonas Bacteria to Evade Antibiotics
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cystic fibrosis, News Low Birth Weight, Poor Weight Gain in First Year Predict Poor Growth in CF Infants, Study Shows
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cystic fibrosis, News French Authorities Approve Reimbursement of Orkambi for CF Patients 2 Years and Older
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cystic fibrosis, News NIH Grants $2.7M for Research on Anaerobic Bacteria’s Role in CF Flare-ups
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Columns, This Lung Life - a Column by Ella Balasa Attending This Year’s North American Cystic Fibrosis Conference Gave Me Hope
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cystic fibrosis, News CF-related Diabetes Affects Girls More Often and at Younger Age than Boys, European Study Shows
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Columns, Victorious - a Column by Brad Dell A Rare Disease Film Festival Made Me Ponder Our Future Fight for Others
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cystic fibrosis, News UI Researchers Develop Breakthrough Approach to Gene Therapies for Respiratory Diseases
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Columns, Mutations & Conversations - a Column by Tré LaRosa Starting Trikafta with Hope for the CF Community
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cystic fibrosis, News Discovered Bacteria ‘Wars’ May Lead to New Antimicrobial Treatments for CF, Study Suggests
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cystic fibrosis, News Patients Adhere Well to CFTR Therapies But High Costs Could Undermine Use, Pharmacy Study Says
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cystic fibrosis, News Vertex Reaches Agreement for CF Medications in Northern Ireland and Wales
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cystic fibrosis, News Rare Disease Film Festival Highlights Patient and Researcher Unity
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Columns, Life in the Grey: a Column by Bailey Anne Vincent Inspiration for Hire: Sick Candidates Only
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cystic fibrosis, News Proteostasis Therapeutics Completes Enrollment in Phase 2 Study Testing Triple Combination Therapy in Cystic Fibrosis
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cystic fibrosis, News Latinos on 2 Caribbean Islands Carry CFTR Mutations Seen in 1% of CF Patients Elsewhere, Study Says
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Becoming Visible by Elizabeth Rogers, Columns Addressing the Issues that Trikafta Benefits Will Bring
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News Bionic Pancreas May Be Useful in Managing Blood Sugar Levels in Adults with CFRD, Small Study Says
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cystic fibrosis, News Eloxx Presents Positive Preclinical and Clinical Data of CF Therapy Candidate ELX-02
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cystic fibrosis, News Preclinical Data Supports Effectiveness of ARO-ENaC, Arrowhead’s Investigational Therapy for CF
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cystic fibrosis, News Two New CFTR Gene Variants Identified in Young CF Patients, Study Reports
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Columns, Mutations & Conversations - a Column by Tré LaRosa What We Should Expect from the CF Foundation’s ‘Path to a Cure’
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cystic fibrosis, News Arrevus Gets Support from NC Biotech Center to Advance ARV-1801 for Pulmonary Exacerbations in CF
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cystic fibrosis, News European Regulators Take Step Toward Possible Approval of Vertex’s New Combo Therapy for 90% of CF Patients
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cystic fibrosis, News $15M Donation to Support CF Research Program at University of Queensland
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cystic fibrosis Trikafta’s Approval the Outcome of ‘20-year Journey That Started with a Dream’, Says Vertex CEO Jeffrey Leiden
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Columns, Life in the Grey: a Column by Bailey Anne Vincent What to Do When Everyone Dies
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Columns, Victorious - a Column by Brad Dell The Present Realizes the Past Through Travel
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cystic fibrosis, News Alaxia Joins iABC to Speed Development of ALX-009, Potential Antibiotic for Resistant Lung Infections
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Columns, Mutations & Conversations - a Column by Tré LaRosa Giving My Anxiety a Name
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cystic fibrosis, News Vertex, NHS England Reach Agreement on Pricing and Public Availability of CF Treatments
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News CF Patients Voice Hopes and Expectations for Trikafta in Instagram Poll
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cystic fibrosis, News CF Mutation Carriers Have Increased Risk for Gastrointestinal Problems, Large-scale Study Finds
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cystic fibrosis, News Cystic Fibrosis Foundation Applauds FDA Approval of Trikafta
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cystic fibrosis, News Europe’s CHMP Issues Positive Opinion on Kalydeco Use in Infants
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Columns, Life in the Grey: a Column by Bailey Anne Vincent Sick Food Diaries: A Day In the Life
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cystic fibrosis, News FDA Approves Trikafta, 1st Vertex Triple Combo with Potential to Treat 90% of CF Patients
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cystic fibrosis, News 1st Patient Enrolled in Phase 2 Study of Inhalation Treatment for All with CF, Boehringer Says
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cystic fibrosis, News First Patients Dosed in Trial Testing MS1819-SD Plus PERT for CF-related Severe EPI, AzurRX Says
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cystic fibrosis, News Regular Exercise Promotes Lung Health in CF by Lowering Adiponectin Levels, Study Suggests
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cystic fibrosis, News Chelsea Financial Services Supporting Boomer Esiason Foundation, CF Research at NYC Marathon
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Columns, Victorious - a Column by Brad Dell The Art of Not Helping
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cystic fibrosis, News Orkambi of Definite Benefit But Risk Evident in Patients Who Can’t Tolerate It, French Study Finds
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Columns, Path Unknown - a Column by Wendy Caroline I’m Grateful for the Journey That Led to My Service Dog
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Columns, Mutations & Conversations - a Column by Tré LaRosa Preventing the Spread of Misinformation
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cystic fibrosis, News UNITY Prenatal Blood Test Accurate at Diagnosing CF, Other Hereditary Diseases, Study Shows
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cystic fibrosis, News Viral Respiratory Tract Infections in Young CF Children Usually Mild, Study Found
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cystic fibrosis, News FDA Designates Vast’s BIOC11 a Qualified Infectious Disease Product
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cystic fibrosis, News Scientists Hope They Have Discovered New Form of CF Therapy
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Columns, Life in the Grey: a Column by Bailey Anne Vincent Sorry Not Sorry That I’m Sick
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cystic fibrosis Experts Highlight Obstacles in Delivering New CF Therapies
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Columns, Mutations & Conversations - a Column by Tré LaRosa Debunking the Myths About Vaccine Safety
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Reflecting on My Favorite Columns of 2019
2019 has given me much to reflect upon, including which of my columns are my favorites from the year. My chosen columns convey what ... Read more -
CF Advocate Andy Lipman Offers Hope to Others With Warrior Project
Cystic fibrosis (CF) advocate, author, Olympic torchbearer, and motivational speaker Andy Lipman didn’t get involved in the CF community — even though he himself had ... Read more -
I Let CF Win When I Gave Up My Veterinarian Dream
It’s hard not to dwell on all of the future plans I might have had if cystic fibrosis (CF) hadn’t entered my life. Things ... Read more -
Two Pivotal Phase 3 Trials of Proteostasis’ CF Triple Combo Therapy to Open in 2020
Proteostasis Therapeutics announced plans to open two Phase 3 clinical trials of its triple combination therapy candidate for cystic fibrosis this year, after a meeting with ... Read more
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I’m Taking a Break from Sharing My Story
I don’t want to talk about it anymore. I’ve gone from being an out-and-proud ... -
Organ Care System Used at Florida Hospital Expected to Make More Lungs Suitable for Transplant
Tampa General Hospital (TGH) announced that is the first in Florida to use an ... -
Approaches Like Yoga, Along with Meds, Key to Managing CF Pain, Experts Say
Tiffany Rich is something of a celebrity in the world of cystic fibrosis (CF). ... -
Trikafta Will Be ‘Life-Transforming,’ Especially for Younger CF Patients, Researchers Say
Trikafta is expected to be a “game-changing” therapy for cystic fibrosis (CF), especially for younger ... -
CF Carriers at Increased Risk for Disease-related Conditions, Study Reports
Cystic fibrosis carriers — individuals who have certain genetic mutations in one of the ... -
New CEO Michael Boyle Outlines ‘Cure, Care, Community’ Priorities for CFF
Michael Boyle, MD, has laid out a five-year strategic plan for the Cystic Fibrosis ...
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New CF Treatment Trikafta Now Available Through AllianceRx Walgreens Prime
Trikafta, a recently approved treatment for cystic fibrosis (CF), is now available through the ... -
Antabio Awarded $4.4M for Continued Research for P. aeruginosa Lung Infection Therapy
Biopharmaceutical company Antabio has been awarded $4.4 million by CARB-X to continue its research ... -
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My Thoughts on How to Build a Better World
I’ve found that one of the most fulfilling things I can do in this ... -
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Chronic Kidney Disease Highly Prevalent in CF, Kidney Function Poorer in Transplanted Patients, Italian Study Says
Patients with cystic fibrosis (CF) have a high prevalence of chronic kidney disease (CKD) ... -
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Here’s How I’m Failing to Support the Mental Health Community
What’s inside me is more than just bones. It’s more than machinery invading foreign ... -
CF Newborn Screening Improves Weight and Lung Outcomes, but Has No Impact on Social Inequalities, Study Suggests
Babies diagnosed with cystic fibrosis (CF) through newborn bloodspot screening show better lung function, ... -
Diet to Help Manage Glucose in CF Patients: A Nutritionist’s View
It is well documented that patients with cystic fibrosis (CF) are a vulnerable population ... -
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Proteostasis to Test Personalized Treatment with Novel CFTR Modulators in Europe
Three investigative therapies by Proteostasis Therapeutics — PTI-801, PTI-808, and PTI-428 — showed potential ... -
I’m Sharing My Friend’s Story with Hope of a Triple-organ Transplant
In this column, I want to share the story of a friend who needs ... -
CFF Offers Emotional Send-off to Retiring CEO Preston Campbell
Preston W. Campbell III, MD, recently bid farewell as president and CEO of the ... -
European Commission Approves Kalydeco for Children as Young as Six Months
The European Commission has approved a label extension for Kalydeco (ivacaftor), allowing the therapy ... -
Confessions from the 10 Percent: Life Without Trikafta
I am one of the 10 percent. The 10 percent cannot take the new, ... -
Gene Therapy Takes Center Stage at 2019 NORD Summit
With so much recent publicity surrounding gene therapy, it’s no surprise that the topic ... -
Kalydeco Improves Lung Function in Patient Carrying Responsive and Non-responsive Mutations, Case Study Reports
Treatment with Kalydeco (ivacaftor) alone improved lung function and quality of life in a cystic ... -
We Must Build a Diverse Coalition Within the CF Community
I learned long ago not to expect everyone to agree with me. I also ... -
Copeptin a Potential Biomarker of Symptom Severity During Pulmonary Exacerbation, Study Shows
High levels of the peptide copeptin are associated with increased severity of cystic fibrosis ... -
Quebec Loans Laurent $2.7M to Finance Trial Testing Oral LAU-7b in All CF Types
The Government of Quebec, in Canada, has approved a loan of $2.7 million Canadian (about ... -
HHS Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases
Despite skyrocketing healthcare costs, President Trump is committed to protecting the 30 million or ... -
Israeli, US Researchers Develop New Device to Eliminate Mucus Secretion from Obstructed Airways
Researchers in Israel and the U.S. have developed a new technology that can be ... -
Cystic Fibrosis Canada Opens Holiday ‘Wish’ Fundraising Campaign
To heighten cystic fibrosis (CF) awareness and raise funds for research, care and advocacy, Cystic ... -
Casting Call: Sickly Leading Ladies Wanted
I miss someone. I don’t even know her … and yet I miss her. ...