Let’s Talk About Death and Grief
I consider myself a conversation-starter. I like discussing serious topics and sharing my genuine feelings and thoughts with others. I enjoy talking about sports, ... Read more
Updates
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Columns, Mutations & Conversations - a Column by Tré LaRosa Let’s Talk About Death and Grief
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cystic fibrosis Virus Can Help Treat Pseudomonas aeruginosa in CF, Study Suggests
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cystic fibrosis, News Movie ‘Five Feet Apart’ Sparks Mixed Reactions Among Cystic Fibrosis Community
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Columns, Las Cosas de la Vida - a Column by Luisa Palazola Sleep Tight, CF Community
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Columns, Work that Works - a Column by Elly Aylwin-Foster Taking to the Skies with Cystic Fibrosis
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cystic fibrosis Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn
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News Symdeko Approved in Australia for CF Patients Age 12 or Older With Certain Gene Mutations
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cystic fibrosis, News Lung Enzyme Cathepsin S is New Therapeutic Target for CF and COPD
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cystic fibrosis, News CF Patient Joshua Skampo Gearing Up for 4th Boston Marathon
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Columns, Path Unknown - a Column by Wendy Caroline My Thoughts on Social Security Disability Insurance
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Columns, Mutations & Conversations - a Column by Tré LaRosa I See Poetry in the Scientific Process
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cystic fibrosis, News ContraFect Granted Up to $6.94M to Develop Novel Therapy Against ESKAPE Pathogens
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cystic fibrosis, News Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist
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News Positive Data from VX-445 Triple Combo Regimen Prompt Vertex to Seek Regulatory Approval
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cystic fibrosis Window for More Effective Treatment of CF Lung Infections is 2 to 3 Years, Study Suggests
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Columns, Work that Works - a Column by Elly Aylwin-Foster How Does Cystic Fibrosis Affect Our Fear of Failure?
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cystic fibrosis NIH Rare Disease Day Highlights Joint Networks Advancing Array of Research
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cystic fibrosis, News Translate Bio Advancing MRT5005 Through Ongoing Phase 1/2 Trial in CF Patients
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cystic fibrosis, News MaRS Innovation Supports LAB150 Research on New Therapeutics for CF and Other Conditions
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Columns, Victorious - a Column by Brad Dell Don’t Distance Yourself from Your OG Carers
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Columns, Mutations & Conversations - a Column by Tré LaRosa The Power of Escapism
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cystic fibrosis, News European HIT-CF Project to Explore ELX-02 as Treatment for Rare CF Mutations
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Social Clips CF Family Friday: Polina and Nellie Bykova’s Sister Power
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Becoming Visible by Elizabeth Rogers, Columns My Sexuality’s Ties to CF
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Columns, Work that Works - a Column by Elly Aylwin-Foster Becoming Perfectly Confident in an Imperfect Body
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cystic fibrosis, News CF Market Research Report Includes Patients’ and Caregivers’ Perspectives
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cystic fibrosis Low-dose Antibiotics Preserve Airway Bacterial Diversity, but at a Cost, Study Finds
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Columns, Mutations & Conversations - a Column by Tré LaRosa CF Science Is Unexpectedly Beautiful
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cystic fibrosis WODC 2019 Organizers Expect 1,200 to Attend Rare Disease Conference in April
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cystic fibrosis, News S. maltophilia Infection Does Not Raise Risk of CF-related Diabetes, Study Says
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Becoming Visible by Elizabeth Rogers, Columns Evolving Toward Becoming Visible
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cystic fibrosis New Gene Therapy Strategy May Reverse Effects of Disease-related Mutations, Study Shows
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Columns, Work that Works - a Column by Elly Aylwin-Foster Taking Sick Leave Shouldn’t Cause Low Self-esteem
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cystic fibrosis NIH Funds Fight Against CF-associated Antibiotic Resistant Bacteria
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cystic fibrosis Vienna to Host RARE2019 Meeting on Rare Diseases
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cystic fibrosis Increased Pulmonary Flares and IgG Antibody Levels Elevate Risk of Joint Disease in CF, Study Says
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Columns, Victorious - a Column by Brad Dell Brad Dell: The Man Without Fear, Almost
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cystic fibrosis, News Hyperbaric Oxygen Treatment May Make Antiobiotics More Effective Against P. aeruginosa Infections, Study Says
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Columns, Mutations & Conversations - a Column by Tré LaRosa CF Forces Me to Have a Different Long-term Outlook
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cystic fibrosis, News Vertex Plans to Ask for Extended Approval of Symkevi in Europe for CF Children Ages 6-11
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cystic fibrosis, News CFF Plans Feb. 28 ‘ResearchCon’ Virtual Event for Cystic Fibrosis Patients
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cystic fibrosis, News Cisco and Emily’s Hope Raise Over $1 Million in CFF’s Great Strides Campaign
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Columns, This Lung Life - a Column by Ella Balasa Sharing Life with CF on Social Media
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Columns, Modern CF Mama - a Column by Janeil Whitworth An Open Letter to the ‘How Are You Feeling?’ Folks
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cystic fibrosis, News ‘Five Feet Apart,’ Film About Teens with CF and Young Love, Teams Up with Fashion Retailer rue21
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Columns, Victorious - a Column by Brad Dell A Life Intimate with Death Is Not a Life Deprived of Beauty
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cystic fibrosis, News Tobramycin Fights P. aeruginosa Bacteria That Impair CFTR Function, Study Says
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Columns, Path Unknown - a Column by Wendy Caroline It’s Hard to Be Graceful While Becoming Disabled
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Columns, Mutations & Conversations - a Column by Tré LaRosa My Family Had 2 Children with CF
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cystic fibrosis Patients, Family and Friends to Take Part in Variety of Rare Disease Day Events Worldwide
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cystic fibrosis, News New company Recida to Focus on Developing Therapies Against Antibiotic-resistant Bacteria
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Social Clips CF Family Friday: The Gaudenzi Mother-Daughter Duo
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cystic fibrosis, News Enrollment Info Updated on Phase 3 Trial Assessing AeroVanc for MRSA Infection in CF
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cystic fibrosis Medical Marijuana ‘Can Help Everyone,’ Says Director at Maryland Cannabis Facility
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cystic fibrosis, News Research Partners Work to Simplify, Improve Assessment of Lungs for Transplant
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Columns, Victorious - a Column by Brad Dell My CF Symptoms Have Made Easy Bullying Targets
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cystic fibrosis, News Utah’s Somer Love Battles CF with Kindness and Strength
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cystic fibrosis Poor Diet Quality Linked to Body Fat Distribution in Adults with Cystic Fibrosis, Study Shows
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cystic fibrosis Group Publishes Guidelines for Home Oxygen Therapy Use in Children
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Columns, Mutations & Conversations - a Column by Tré LaRosa My Thoughts on Exercise and CF
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cystic fibrosis Hypertonic Saline Activates Neurons that Contribute to Airway Surface Liquid Production in CF, Study Suggests
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Columns, Work that Works - a Column by Elly Aylwin-Foster Tried and True Tactics to Stay Healthy in the Office
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cystic fibrosis, News Cystic Fibrosis Canada Holding 30th Annual Golf Fundraiser Event June 17 in Calgary
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cystic fibrosis, News Link Found Between P. aeruginosa Infection and Disease Severity in CF Patients, Study Reports
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Columns, Victorious - a Column by Brad Dell Children Teach Us How to Love People with Health Conditions and Disabilities
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cystic fibrosis, News Toddlers Age 1-2 With CF Can Now Be Treated With Kalydeco in Canada
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Columns, Mutations & Conversations - a Column by Tré LaRosa The Burden of Care in the Life of a CF Patient
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cystic fibrosis, News Personalized Nutrition Programs May Help Improve Outcomes for CF Patients, Survey Suggests
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cystic fibrosis, News CF Foundation Gives $4.5M to Expedite Talee Bio’s Development of Two Gene Therapy Candidates
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Columns, Work that Works - a Column by Elly Aylwin-Foster Making Dreams Come True in Uncertain Times
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cystic fibrosis, News European Research Team Granted €6.8M to Develop Non-viral Gene Therapy System
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cystic fibrosis, News Orkambi Approved in Europe for Younger CF Patients with F508del Mutations
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Columns, Victorious - a Column by Brad Dell What Storm Drain Adventures Taught Me About CF Treatments
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cystic fibrosis, News CF Patients Navigate Increasingly Complex Health Insurance Quagmire
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cystic fibrosis, News Woman’s Lawsuit Put Emphasis on ‘Urgency’ in Deciding Organ Transplants in US
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Columns, Mutations & Conversations - a Column by Tré LaRosa The Diverse Spectrum of Health Across the CF Community
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cystic fibrosis, News Non-invasive Ventilation Improves Lung Function in CF Patients But Not Survival, Study Finds
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Columns, Work that Works - a Column by Elly Aylwin-Foster My Search for Happier, Healthier Work
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cystic fibrosis, News Phase 2 Trial Testing SPI-1005 for Ototoxicity in CF Patients Moving Forward
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cystic fibrosis, News CFF’s Preston Campbell: 2019 is a ‘Pivotal Year’ for CF Therapies
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Columns, Victorious - a Column by Brad Dell Transplant Is Horrendous in the Beginning — You’re Not Abnormal
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cystic fibrosis, News Immunotherapy May Be Promising Strategy to Treat Chronic Infections of P. aeruginosa in CF Patients
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Columns, Mutations & Conversations - a Column by Tré LaRosa Let’s Use the Cystic Fibrosis News Today Forums for Empowerment
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cystic fibrosis, News Eluforsen Improves CFTR Protein Function in CF Patients with F508del Mutations, Phase 1 Trial Shows
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cystic fibrosis, News WHO Approves Ensifentrine as Name for Potential Inhaled Treatment Now in Clinical Trials
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cystic fibrosis, News New Inhaled Carrier May Work for CF mRNA Therapy, Mouse Study Finds
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cystic fibrosis Alcresta’s Relizorb Given Medicare/Medicaid Billing Code for Easier Claims
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Columns, Victorious - a Column by Brad Dell My Trip to Hawaii Symbolizes My Victory Over Death by CF
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cystic fibrosis, News Vertex and Arbor Biotechnologies Collaborating to Develop Cystic Fibrosis Gene Therapies
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Columns, Mutations & Conversations - a Column by Tré LaRosa Empowering Children by Educating Them About Their CF
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cystic fibrosis Claire’s Place Foundation Grants to Help CF Families Reaches $1 Million Milestone
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cystic fibrosis Vertex to Request Review of Orkambi, Symkevi Plus Kalydeco for Public Funding in Scotland
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News Using Food as Medicine to Manage CF: A Nutritionist’s View
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cystic fibrosis, News AzurRx Starts Phase 2 Clinical Trial Testing MS1819-SD in CF Patients With EPI
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cystic fibrosis Rising Healthcare Costs Strain EU Budgets Even as New Therapies Flourish
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cystic fibrosis, News Gene Expression Patterns in Blood May Lead to Patient-tailored CF Treatment, Study Finds
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cystic fibrosis, News CFF Aids Development of NO-based Therapy, BIOC51, for Resistant Bacteria, Vast Therapeutics Says
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cystic fibrosis, News New Dual-antibiotic Powder Inhalation More Effective Against Drug-resistant Bacteria, Researchers Say
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Columns, Mutations & Conversations - a Column by Tré LaRosa How Should We Approach Milestones While Grieving?
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Virus Can Help Treat Pseudomonas aeruginosa in CF, Study Suggests
A new study shows that bacteriophages, viruses that naturally infect bacteria, can be used to fight Pseudomonas aeruginosa, the most common bacteria found ... Read more -
Movie ‘Five Feet Apart’ Sparks Mixed Reactions Among Cystic Fibrosis Community
Warning: Spoilers for the movie are contained in this story. Mention a rare disease milestone — and a new approach to treatment, a new ... Read more -
Sleep Tight, CF Community
Life has a way of changing plans and allowing others to help you embrace a new path. Before I sat down to write this ... Read more -
Taking to the Skies with Cystic Fibrosis
The gentleman in front of me is held up. An unsmiling, uniformed official calls him to one side with a brisk gesture. We exchange ... Read more
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Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn
Madeline Collin, a 24-year-old activist with Gaucher disease, worries that patients like her will ... -
Symdeko Approved in Australia for CF Patients Age 12 or Older With Certain Gene Mutations
Cystic fibrosis (CF) patients in Australia age 12 and older, who have two copies of ... -
Lung Enzyme Cathepsin S is New Therapeutic Target for CF and COPD
Blocking the enzyme cathepsin S can alleviate symptoms and reduce lung damage in cystic ... -
CF Patient Joshua Skampo Gearing Up for 4th Boston Marathon
Like scores of runners everywhere, when Joshua Skampo gets home from work, he pulls ... -
My Thoughts on Social Security Disability Insurance
I was shocked recently when my social worker brought up for the first time ... -
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ContraFect Granted Up to $6.94M to Develop Novel Therapy Against ESKAPE Pathogens
ContraFect will receive up to $6.94 million in funding from CARB-X to support the development ... -
Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist
With each new advance in medicine comes ethical dilemmas, from fertility treatments and newborn ... -
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Translate Bio Advancing MRT5005 Through Ongoing Phase 1/2 Trial in CF Patients
An ongoing Phase 1/2 clinical trial exploring Translate Bio’s investigational therapy MRT5005 will start ... -
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European HIT-CF Project to Explore ELX-02 as Treatment for Rare CF Mutations
Eloxx Pharmaceuticals will explore the potential of its lead investigational drug candidate, ELX-02, as ... -
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Becoming Perfectly Confident in an Imperfect Body
Picture the scene: You’re standing in front of a sea of faces about to ... -
CF Market Research Report Includes Patients’ and Caregivers’ Perspectives
NetNoggin has launched a new cystic fibrosis (CF) market research report to highlight patient and ... -
Low-dose Antibiotics Preserve Airway Bacterial Diversity, but at a Cost, Study Finds
Using lower, or suboptimal, doses of antibiotics to treat lung infections in children and ... -
CF Science Is Unexpectedly Beautiful
During my sophomore year of college, the background on my computer screen was a ... -
WODC 2019 Organizers Expect 1,200 to Attend Rare Disease Conference in April
The world’s biggest gathering of rare disease researchers, patient groups, pharmaceutical executives, and government ... -
S. maltophilia Infection Does Not Raise Risk of CF-related Diabetes, Study Says
Despite being commonly found in patients with cystic fibrosis-related diabetes, the bacteria Stenotrophomonas maltophilia cannot ... -
Evolving Toward Becoming Visible
Doctors diagnosed me with cystic fibrosis (CF) at 18 months old and I recently ... -
New Gene Therapy Strategy May Reverse Effects of Disease-related Mutations, Study Shows
A new strategy to genetically prevent disease-related mutations from occurring shows the potential to ... -
Taking Sick Leave Shouldn’t Cause Low Self-esteem
During these last two weeks, I’ve felt the sickest I have in years. I ... -
NIH Funds Fight Against CF-associated Antibiotic Resistant Bacteria
Researchers at Case Western Reserve University School of Medicine have received a $3.34 million grant ... -
Vienna to Host RARE2019 Meeting on Rare Diseases
About 100 scientists, researchers, pharmaceutical executives, and others will converge on Austria’s capital city ... -
Increased Pulmonary Flares and IgG Antibody Levels Elevate Risk of Joint Disease in CF, Study Says
Joint disease, or arthropathy, is common among people with cystic fibrosis (CF), and more ... -
Brad Dell: The Man Without Fear, Almost
Imagine how much easier cystic fibrosis (CF) would be if we didn’t have fears. ... -
Hyperbaric Oxygen Treatment May Make Antiobiotics More Effective Against P. aeruginosa Infections, Study Says
Exposing cystic fibrosis (CF) patients to high levels of oxygen through hyperbaric oxygen treatment may make Pseudomonas ... -
CF Forces Me to Have a Different Long-term Outlook
In high school, I aspired to be a pulmonologist for obvious reasons: I wanted ... -
Vertex Plans to Ask for Extended Approval of Symkevi in Europe for CF Children Ages 6-11
Results from a Phase 3 trial demonstrate that Symkevi (tezacaftor and ivacaftor combo), known ... -
CFF Plans Feb. 28 ‘ResearchCon’ Virtual Event for Cystic Fibrosis Patients
Later this month, the Cystic Fibrosis Foundation (CFF) will host ResearchCon, its first virtual event ... -
Cisco and Emily’s Hope Raise Over $1 Million in CFF’s Great Strides Campaign
Emily’s Hope and Cisco have raised more than $1 million as part of Great Strides ...