I Can’t Visualize My Video Game Characters Without Cystic Fibrosis
I have what some might call a bad habit. I can easily spend hours a day playing video games. My favorites are role-playing games that ... Read more
Updates
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Becoming Visible by Elizabeth Rogers, Columns I Can’t Visualize My Video Game Characters Without Cystic Fibrosis
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cystic fibrosis, News High Liver Enzyme Levels Linked to Risk of CF-Related Diabetes, Especially in Men, Study Finds
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News Citing Costs, Scotland Regulators Reject Adding Orkambi and Symkevi to National Health System
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Columns, This Lung Life - a Column by Ella Balasa When Will I Be ‘Sick Enough’ for a Transplant?
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cystic fibrosis, News Lungs Grown in Yale Lab Have Potential for Patients with CF, Other Chronic Lung Diseases
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Columns, Life in the Grey: a Column by Bailey Anne Vincent Choosing Scars, One Tattoo at a Time
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Columns, Victorious - a Column by Brad Dell Clinical Anxiety of an Unexpected Type
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cystic fibrosis, News Minimally Invasive Imaging Device Shows Changes in Nasal Airways, May Allow Earlier CF Diagnosis
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Columns, Path Unknown - a Column by Wendy Caroline Don’t Just Say I’m an Inspiration, Tell Me Why
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Columns, Mutations & Conversations - a Column by Tré LaRosa Our Relationships with Our Doctors Are Stronger When We Self-advocate
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cystic fibrosis Gene Editing Tool Corrects CF-causing Mutations in Patient-derived Cells, Study Shows
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cystic fibrosis, News ’65_RedRoses’ Event, Tracing Life of Woman with CF, Will Support Transplant Research in Canada
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cystic fibrosis, News CF Foundation Earmarks Up to $15M for Arcturus Therapeutics to Advance Experimental RNA Therapy
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cystic fibrosis Italfarmaco, Neupharma Partner to Develop Inhaled Form of Teicoplanin to Treat CF Lung Infections
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Columns, Life in the Grey: a Column by Bailey Anne Vincent Healthcare Could Use the Kinesthetic Empathy of Dance
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cystic fibrosis Eloxx Pharmaceuticals Will Launch Phase 2 ELX-02 Trial for CF Patients Carrying G542X Mutation
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Columns, Mutations & Conversations - a Column by Tré LaRosa Is There an Upper Limit to the Improvements That CFTR Modulators Can Provide?
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cystic fibrosis, News Translate Bio’s MRT5005 May Improve Lung Function With a Single Dose, Interim Trial Data Shows
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cystic fibrosis, News Long-term Treatment with Kalydeco Decreases Risk of Lung Infection, Study Reports
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News Rare Disease Groups Seek Public Support to Renew Newborn Screening Act in Senate
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Columns, Work that Works - a Column by Elly Aylwin-Foster Let’s Talk About Money: Dollars and Disabilities in the Workplace
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cystic fibrosis Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card
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cystic fibrosis, News Using Nebulizer While Lying on Alternating Sides Can Better Deposit Therapy Across Lungs, Trial Finds
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cystic fibrosis, News Development Bank of Wales Raises Funds for UK’s Cystic Fibrosis Trust
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Columns, Life in the Grey: a Column by Bailey Anne Vincent Do You Feel What I Feel?
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cystic fibrosis, News Proteostasis Begins Dosing in Phase 2 Trial of 3 CF Investigational Therapies
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Columns, Path Unknown - a Column by Wendy Caroline I Am Not a Morning Person
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Columns, Mutations & Conversations - a Column by Tré LaRosa The Long-term Effect of Disability Language
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cystic fibrosis, News Vertex Names Reshma Kewalramani to Succeed Leiden as CEO, Advance Therapies to 90% of CF Patients
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Becoming Visible by Elizabeth Rogers, Columns Accepting the Bumps in the Road
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cystic fibrosis, News Arts, Education, Song, and Advocacy Programs Awarded 2019 Impact Grants by CFF
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Columns, Work that Works - a Column by Elly Aylwin-Foster Use Me for Something Good
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cystic fibrosis, News Mylan Given Rights to Market TOBI Solution and TOBI Podhaler in UK
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cystic fibrosis, News AR-501 Named Orphan Drug in EU as Possible Treatment for Chronic Lung Infections in CF
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Columns, Life in the Grey: a Column by Bailey Anne Vincent Chronic Bullying Is the Worst Sickness of All
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cystic fibrosis, News Vertex Asks FDA to Approve 1st Triple Combo for CF – Elexacaftor, Tezacaftor and Kalydeco
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Columns, Mutations & Conversations - a Column by Tré LaRosa ‘Everything’ Will Never Be Perfect, and That’s OK
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cystic fibrosis, News Kalydeco’s Safety and Benefits Studied in CF Patients with Severe Lung Disease
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News NIH $150,000 Grant to Support Research into Preserving Fertility in Women Prior to Lung Transplant
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Columns, Work that Works - a Column by Elly Aylwin-Foster How Much CF Do You Choose to Show?
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cystic fibrosis European Initiative Targets Diagnosis, Treatment of Rare Diseases
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cystic fibrosis, News Pancreas-on-a-chip Expected to Shed Light, Help Find New Treatments for CF-related Diabetes
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cystic fibrosis, News Pregnancy in CF Women With Poor Lung Function Not Linked to Pulmonary Decline, Study Shows
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Columns, Life in the Grey: a Column by Bailey Anne Vincent An Open Apology to the Guy Who Married the Sick Girl
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Columns, Victorious - a Column by Brad Dell We Don’t Get Used to Disease, So We Still Need Your Support
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cystic fibrosis, News NIH $2.3M Grant to Help Develop Nanoparticle Therapy for Muscle- and Weight-wasting Disorder
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Columns, Mutations & Conversations - a Column by Tré LaRosa Transforming Adversity into Progress
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cystic fibrosis, News Babies Treated with Synagis Show No Lasting Benefits in Lung Health as 7-Year-Olds, Real-world Study Finds
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cystic fibrosis, News Different CFTR Potentiators Bind to Same Flexible Spot on Protein, Study Finds
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Columns, Work that Works - a Column by Elly Aylwin-Foster What Does It Mean to Be a Patient?
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cystic fibrosis, News Eluforsen Improves CFTR Function in Cellular and Animal Models of CF, Study Says
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cystic fibrosis, News AzurRx BioPharma Launches Phase 2 Trial Testing MS1819-SD Combined With PERT for EPI
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Columns, Life in the Grey: a Column by Bailey Anne Vincent Medicine Is Splitting Me into Pieces
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Columns, Victorious - a Column by Brad Dell Why Rare Disease Communities Must Stand United
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cystic fibrosis, News Modified and More Rigorous Cleansing Procedure May Better Prepare CF Patients for Colonoscopy, Study Says
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Columns, Mutations & Conversations - a Column by Tré LaRosa Is it Ethical to Have Another Child Once You’ve Had One with CF?
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cystic fibrosis, News IMPACT-breath Study Explores Non-invasive Diagnosis of Pseudomonas Aeruginosa Lung Infections in CF Patients
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cystic fibrosis World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients
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cystic fibrosis, News Adding CF-specific Variables More Accurately Prioritizes Patients on Lung Transplant Waitlist, Study Says
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Columns, Life in the Grey: a Column by Bailey Anne Vincent I Need Help Asking for Help
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cystic fibrosis, News BillionToOne Announces Launch of UNITY Prenatal Screen
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Columns, Mutations & Conversations - a Column by Tré LaRosa Finding My CF Community Has Restored My Sense of Belonging
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News FDA Grants Orphan Drug Status to AR-501, Potential CF Treatment for Chronic Lung Infections
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News Children’s Book ‘Our Baby has Sixty-Five Roses’ Launched by CF Parent
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Columns, Work that Works - a Column by Elly Aylwin-Foster From Boom to Bust: Managing Work with CF
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cystic fibrosis, News Ultrasound Can Help Detect Liver Disease in Kids with CF, Study Says
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Columns, This Lung Life - a Column by Ella Balasa Soul Sisters: My Reflections on Mallory Smith’s Memoir
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News Better Access to Relizorb for Patients on Feeding Tubes Advocated by Doctors and Dietitians
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News NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala
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Columns, Life in the Grey: a Column by Bailey Anne Vincent Diet Tips from a ‘Dying’ Girl
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Columns, Victorious - a Column by Brad Dell Are Anger and Fear Villains, or Must We Acknowledge Them to Thrive?
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News FDA Approves Symdeko for Treatment of CF Children, Ages 6 to 11, with Certain CFTR Mutations
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Columns, Mutations & Conversations - a Column by Tré LaRosa My Recent Health Revelation Got Me Thinking About Infertility and CF
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News Long Use of Inhaled Antibiotics to Treat P. aeruginosa in Children May Raise Risk of Fungal Infection
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Becoming Visible by Elizabeth Rogers, Columns My Temporary Foray into the Visible Realm of an Invisible Illness
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cystic fibrosis, News Orkambi Improves Exercise Tolerance in Adults With Severe CF, Study Shows
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Columns, Work that Works - a Column by Elly Aylwin-Foster Avoiding the Pitfalls of Information Overload
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cystic fibrosis Eurordis Unveils Integrated-care Initiative for Rare Disease Patients
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cystic fibrosis, News Snail Slime May Lead to New CF Treatments Because of Its Antimicrobial Proteins
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cystic fibrosis, News UK’s Cystic Fibrosis Trust Urges Participation in ‘Wear Yellow Day’ June 21
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cystic fibrosis, News Kalydeco Shows Long-term Efficacy in CF Patients in Real-world Setting
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cystic fibrosis ‘Rare Barometer’ Program Helps Eurordis Shape EU Rare Disease Policy
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Columns, Mutations & Conversations - a Column by Tré LaRosa How to Overcome the Scourge of Confirmation Bias
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cystic fibrosis, News Eluforsen Found to be Safe for Adults with Cystic Fibrosis Caused by F508del Mutation, Study Reports
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cystic fibrosis, News Bronchitol, Inhalation Powder for CF Patients, to Enter Swiss Market
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cystic fibrosis, News Murepavadin Antibiotic Well-tolerated by Animals Infected with Pseudomonas Aeruginosa, Preclinical Data Show
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cystic fibrosis, News Inhaled Imipenem/cilastatin an Alternative Treatment for Lung Infection in Children with CF, Case Reports Show
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Columns, Life in the Grey: a Column by Bailey Anne Vincent To the Child I’ll Never Have
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cystic fibrosis, News Kalydeco Restored Pancreatic Function in Boy with CF, Case Report Suggests
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Columns, Mutations & Conversations - a Column by Tré LaRosa Science Literacy Is a Necessity in the CF Community
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News Candidate Therapy ELX-02 Shows Positive Results in Preclinical and Phase 1 Studies
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Becoming Visible by Elizabeth Rogers, Columns Slammed by Side Effects: The Downside of Antibiotics
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cystic fibrosis, News Inaugural Clairity Ball Celebrating the Life of Claire Wineland Set for June 29
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Columns, Work that Works - a Column by Elly Aylwin-Foster Full Disclosure: A Tale of Professional Rejection
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cystic fibrosis, News Investigational CFTR Amplifier PTI-428 Receives Orphan Drug Status in Europe
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cystic fibrosis, News Manuka Honey Could Be Used to Treat CF Lung Infection P. Aeruginosa, Study Suggests
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Columns, Victorious - a Column by Brad Dell Screwed Over Expectations, Pura Vida, and a New Normal
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High Liver Enzyme Levels Linked to Risk of CF-Related Diabetes, Especially in Men, Study Finds
High blood levels of the enzyme alanine aminotransferase (ALT) — a biomarker of liver damage — might indicate a higher risk of rising blood sugar ... Read more -
Citing Costs, Scotland Regulators Reject Adding Orkambi and Symkevi to National Health System
The Scottish Medicines Consortium (SMC) is recommending against bringing two of Vertex Pharmaceuticals’ approved cystic fibrosis (CF) treatments — Orkambi (lumacaftor/ivacaftor) and Symkevi ... Read more -
When Will I Be ‘Sick Enough’ for a Transplant?
On some days, the motivation to pedal a stationary bike and feel the burn and breathlessness for 20 straight minutes is buried under a ... Read more -
Lungs Grown in Yale Lab Have Potential for Patients with CF, Other Chronic Lung Diseases
Lung transplants are the ultimate therapeutic strategy for many people with cystic fibrosis (CF) and other chronic lung diseases, but they are scarce due ... Read more
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Choosing Scars, One Tattoo at a Time
My tattoos hold more stories than my scars. In a way, my tattoos are ... -
Clinical Anxiety of an Unexpected Type
Hi, my name is Brad Dell, and I have clinical anxiety disorder. Well, disorders. ... -
Minimally Invasive Imaging Device Shows Changes in Nasal Airways, May Allow Earlier CF Diagnosis
A minimally invasive imaging device that generates high-resolution images of nasal airways, including the ... -
Don’t Just Say I’m an Inspiration, Tell Me Why
I recently wrote a post on social media about my health struggles. Having disappeared ... -
Our Relationships with Our Doctors Are Stronger When We Self-advocate
Doctors receive training in particular specialties and, in some cases, subspecialties. But “specialties” and ... -
Gene Editing Tool Corrects CF-causing Mutations in Patient-derived Cells, Study Shows
Using the CRISPR gene editing tool, a team of researchers was able to permanently ...
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’65_RedRoses’ Event, Tracing Life of Woman with CF, Will Support Transplant Research in Canada
A 10th anniversary screening of the documentary “65_RedRoses” will take place on Sunday, Sept. ... -
CF Foundation Earmarks Up to $15M for Arcturus Therapeutics to Advance Experimental RNA Therapy
The Cystic Fibrosis Foundation (CFF) will give up to $15 million to Arcturus Therapeutics to advance ... -
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Translate Bio’s MRT5005 May Improve Lung Function With a Single Dose, Interim Trial Data Shows
A single dose of MRT5005, Translate Bio‘s first-in-class messenger RNA (mRNA) therapy for the ... -
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Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card
Oklahoma suffers more tornadoes than any other state, has the highest per-capita rate of ... -
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Proteostasis Begins Dosing in Phase 2 Trial of 3 CF Investigational Therapies
The first patient has been dosed in a Phase 2 clinical trial testing Proteostasis ... -
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The Long-term Effect of Disability Language
The life of a person with CF is constantly affected by language. A common ... -
Vertex Names Reshma Kewalramani to Succeed Leiden as CEO, Advance Therapies to 90% of CF Patients
Jeffrey Leiden, who in seven years has taken Vertex Pharmaceuticals to the cusp of ... -
Accepting the Bumps in the Road
Life with cystic fibrosis (CF) has made me all too aware of the ticking ... -
Arts, Education, Song, and Advocacy Programs Awarded 2019 Impact Grants by CFF
Five programs helping to empower the cystic fibrosis (CF) community were selected to receive ... -
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Mylan Given Rights to Market TOBI Solution and TOBI Podhaler in UK
The European Commission (EC) and the U.K.’s Medicines and Healthcare products Regulatory Agency (MHRA) granted ... -
AR-501 Named Orphan Drug in EU as Possible Treatment for Chronic Lung Infections in CF
The European Medicines Agency (EMA) granted orphan drug status to AR-501, a treatment candidate ... -
Chronic Bullying Is the Worst Sickness of All
It sucks being sick. This is a fact. But, contrary to popular belief, being ... -
Vertex Asks FDA to Approve 1st Triple Combo for CF – Elexacaftor, Tezacaftor and Kalydeco
Vertex Pharmaceuticals is asking the U.S. Food and Drug Administration to approve a first ... -
‘Everything’ Will Never Be Perfect, and That’s OK
I’ve always been able to eat whatever I wanted. That’s just a part of ... -
Kalydeco’s Safety and Benefits Studied in CF Patients with Severe Lung Disease
Treatment with Kalydeco (ivacaftor) improved lung function, exercise capacity, and sweat chloride concentration in cystic fibrosis (CF) ... -
NIH $150,000 Grant to Support Research into Preserving Fertility in Women Prior to Lung Transplant
Sigrid Ladores, PhD, an associate professor at the University of Alabama at Birmingham School of ... -
How Much CF Do You Choose to Show?
Getting older has its perks. With each passing year, I find I’m a little ... -
European Initiative Targets Diagnosis, Treatment of Rare Diseases
A new international consortium based in Paris, and funded largely by the 28-member European ... -
Pancreas-on-a-chip Expected to Shed Light, Help Find New Treatments for CF-related Diabetes
Scientists have created a miniature human pancreas-on-a-chip that may help identify the cause of ...