Cystic Fibrosis Archives - Patient Worthy

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Rare Community Profiles: How Beth and Madison Advocated for Public Funding for the First Cystic Fibrosis (CF) Modulator in Canada

Post author:Jessica Lynn
Post published:April 11, 2024
Post category:Cystic Fibrosis

Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…

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Atlanta Braves’ Ronald Acuña Jr. Plays Catch with Fan Living with Cystic Fibrosis (CF)

Post author:Jessica Lynn
Post published:March 28, 2024
Post category:Cystic Fibrosis

Ronald Acuña Jr. is a professional baseball player with the Atlanta Braves. The powerhouse player is known for being an NL MVP and for becoming the first player in Major…

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March 23: Lee University to Host the 2024 65 Roses 5K for Cystic Fibrosis (CF) Awareness

Post author:Jessica Lynn
Post published:March 14, 2024
Post category:Cystic Fibrosis

Editor's Note: Chronic conditions and rare diseases don't discriminate, Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have…

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Cystic Fibrosis Foundation to Host 8th Annual BreatheCon on February 9-10, 2024

Post author:Jessica Lynn
Post published:January 19, 2024
Post category:Cystic Fibrosis

Do you have cystic fibrosis? Are you searching for a stronger sense of community? Then BreatheCon, the unique virtual event spearheaded by the Cystic Fibrosis Foundation, is perfect for you! …

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Orphan Drug Designation Granted to ARCT-032 for Cystic Fibrosis

Post author:Jessica Lynn
Post published:December 4, 2023
Post category:Cystic Fibrosis

Historically, drug development within the rare disease space has been stifled; companies tend to focus on developing therapies for bigger patient populations that will be more impactful and more…

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Look Out for These Signs of Nasal Polyps

Post author:James Moore
Post published:October 9, 2023
Post category:Cystic Fibrosis Nasal polyps

Nasal polyps are non-cancerous growths that develop into the nasal passages. Generally, they don't cause any pain. However, when they reach a certain size, they can inhibit the sense of…

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“Make That Geezer Get Those Tattoos:” A Cystic Fibrosis Fundraising Mission May Result in 65 Tattoos

Post author:Jessica Lynn
Post published:August 13, 2023
Post category:Cystic Fibrosis

65 roses. This phrase is often used in reference to cystic fibrosis; in fact, the origin of 65 roses is a young boy who couldn’t properly pronounce the name…

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Two Studies Find that a Three-Drug Combination Improves Cystic Fibrosis Symptoms

Post author:Rose Duesterwald
Post published:July 29, 2023
Post category:Cystic Fibrosis

Findings from the Max Delbrück Center and the Charité Universitätsmedizin Berlin have been published in the European Respiratory Journal stating that a triple combination therapy can improve CF symptoms…

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Cystic Fibrosis Drug Receives Label Extension in Europe

Post author:James Moore
Post published:July 28, 2023
Post category:Cystic Fibrosis

According to a story from European Pharmaceutical Review, the European Commission has recently approved a label extension of ORKAMBI (lumacaftor/ivacaftor), a drug used to treat cystic fibrosis. Under the extension,…

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First Patient Dosed in KB407 Study for Cystic Fibrosis

Post author:Jessica Lynn
Post published:July 22, 2023
Post category:Cystic Fibrosis

Advances in research and medicine have improved the life expectancy for people with cystic fibrosis. But this doesn't mean that we should stop searching for a cure. Most likely,…

CF patient Nicole and her family

Kaftrio Saved Our Lives – Now We Are Fighting for Cystic Fibrosis Patients Around the World to Have the Same Chance

Post author:Patient Worthy Contributor
Post published:June 6, 2023
Post category:Cystic Fibrosis Timely

“Three years ago, my lung function was 11% and I was hours from death, then I received the gift of life – which was Trikafta.” These are the words of…

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May is Cystic Fibrosis (CF) Month and Some Patients Are Living Past Middle Age Due to Treatment Advances

Post author:Rose Duesterwald
Post published:May 8, 2023
Post category:Cystic Fibrosis

There is no cure for cystic fibrosis. That is the reason the Cystic Fibrosis Research Institute (CFRI) is very vocal and makes it clear that cooperation is needed from the…

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Nanoparticles Delivering mRNA Gene Editing Solutions to the Lungs Can Combat Genetic Diseases

Post author:Jessica Lynn
Post published:May 1, 2023
Post category:Cystic Fibrosis Idiopathic Pulmonary Fibrosis

Treatment advances are occurring daily in the field of rare disease. As researchers hone their strategies and tools, new technologies are emerging with the potential to significantly impact patients…

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Paddleboarding Helps Woman with CF Find Peace

Post author:Jessica Lynn
Post published:April 27, 2023
Post category:Cystic Fibrosis

Rylee Riekena feels most at home when she’s near water. There’s something about the ocean that just makes her feel safe and at peace. So when she took up paddleboarding,…

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April 28: Carteret Community College Holds Annual “Great Strides” Walk for Cystic Fibrosis

Post author:Jessica Lynn
Post published:April 26, 2023
Post category:Cystic Fibrosis

Each year, students at Carteret Community College in Morehead City, North Carolina participate in the “Great Strides” Walk for Cystic Fibrosis. “Great Strides” is the Cystic Fibrosis Foundation’s largest fundraising…

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Bojamz Raises Funds to Support Twins with Cystic Fibrosis

Post author:Jessica Lynn
Post published:April 11, 2023
Post category:Cystic Fibrosis

Boshamps Seafood & Oyster House has been serving Destin, FL with authentic Gulf seafood, well-mixed libations, and live music for years. But that isn’t the only way Boshamps has made…

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A Cystic Fibrosis Diagnosis No Longer Automatically Qualifies for Make-A-Wish

Post author:Jessica Lynn
Post published:April 7, 2023
Post category:Cystic Fibrosis

Children with cystic fibrosis (CF) born between 1995 and 1999 had an estimated life expectancy of 32 years. Advances in both research and treatment have contributed to increased life…

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Is This Pharmaceutical Company Putting Profits Over the Lives of Cystic Fibrosis Patients?

Post author:James Moore
Post published:February 23, 2023
Post category:Cystic Fibrosis

The advocacy group Just Treatment recently published a press release titled 'BREAKING: Cystic Fibrosis Patients Launch Global Challenge to Vertex Monopoly on CF Drugs.' Vertex Pharmaceuticals has taken the lead…

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KB407 for Cystic Fibrosis Granted Orphan Status in Europe

Post author:Jessica Lynn
Post published:January 25, 2023
Post category:Cystic Fibrosis

In 2020, the U.S. FDA granted Orphan Drug designation to KB407, an investigational gene therapy for patients with cystic fibrosis (CF). More recently, at the start of 2023, the…

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Cutting-Edge Cystic Fibrosis Therapies Are Overpriced. This Campaign is Calling for Greater Access

Post author:James Moore
Post published:November 30, 2022
Post category:Cystic Fibrosis

In recent years, treatment options for cystic fibrosis, a rare disease, have increased significantly in number and in effectiveness. However, many of the most effective treatments, developed by Vertex Pharmaceuticals,…

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Newborn Screenings Miss Cystic Fibrosis in Non-White Newborns

Post author:Jessica Lynn
Post published:November 28, 2022
Post category:Cystic Fibrosis

Newborn screening is a public health program in which infants are screened for various metabolic, genetic, and developmental disorders shortly after birth. Through newborn screening, doctors may identify potential disorders…

Prolonged PPI Use Could Increase Respiratory Infection Risk in CF

Post author:Jessica Lynn
Post published:November 23, 2022
Post category:Cystic Fibrosis

Proton pump inhibitors (PPIs) are a class of medicine that reduce the amount of stomach acid production. They are commonly known for their use in acid-related disorders, such as gastroesophageal…

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Could Azithromycin Reduce Cystic Fibrosis Lung Inflammation?

Post author:Jessica Lynn
Post published:June 14, 2022
Post category:Cystic Fibrosis

Have you ever heard of azithromycin? It’s an antibiotic. Chances are, if you’ve ever had a bacterial infection, you’ve even taken it. But according to Medical XPress, researchers are currently…

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Girl with CF Excited to See Where Kaftrio Takes Her

Post author:Jessica Lynn
Post published:April 28, 2022
Post category:Cystic Fibrosis

Earlier this year, the MHRA in the United Kingdom expanded the license for Kaftrio, a treatment option for patients with cystic fibrosis (CF). When this expansion occurred, allowing for the…

Golden Ticket: Competition to Create Genetic CF Treatments

Post author:Kendall Mason
Post published:April 26, 2022
Post category:Cystic Fibrosis

Many of us are familiar with the famous story written by Roald Dahl titled Charlie and the Chocolate Factory; we know the tale of the golden ticket and Charlie's journey to…

Rare Community Profiles: How Beth and Madison Advocated for Public Funding for the First Cystic Fibrosis (CF) Modulator in Canada

Atlanta Braves’ Ronald Acuña Jr. Plays Catch with Fan Living with Cystic Fibrosis (CF)

March 23: Lee University to Host the 2024 65 Roses 5K for Cystic Fibrosis (CF) Awareness

Cystic Fibrosis Foundation to Host 8th Annual BreatheCon on February 9-10, 2024

Orphan Drug Designation Granted to ARCT-032 for Cystic Fibrosis

Look Out for These Signs of Nasal Polyps

“Make That Geezer Get Those Tattoos:” A Cystic Fibrosis Fundraising Mission May Result in 65 Tattoos

Two Studies Find that a Three-Drug Combination Improves Cystic Fibrosis Symptoms

Cystic Fibrosis Drug Receives Label Extension in Europe

First Patient Dosed in KB407 Study for Cystic Fibrosis

Kaftrio Saved Our Lives – Now We Are Fighting for Cystic Fibrosis Patients Around the World to Have the Same Chance

May is Cystic Fibrosis (CF) Month and Some Patients Are Living Past Middle Age Due to Treatment Advances

Nanoparticles Delivering mRNA Gene Editing Solutions to the Lungs Can Combat Genetic Diseases

Paddleboarding Helps Woman with CF Find Peace

April 28: Carteret Community College Holds Annual “Great Strides” Walk for Cystic Fibrosis

Bojamz Raises Funds to Support Twins with Cystic Fibrosis

A Cystic Fibrosis Diagnosis No Longer Automatically Qualifies for Make-A-Wish

Is This Pharmaceutical Company Putting Profits Over the Lives of Cystic Fibrosis Patients?

KB407 for Cystic Fibrosis Granted Orphan Status in Europe

Cutting-Edge Cystic Fibrosis Therapies Are Overpriced. This Campaign is Calling for Greater Access

Newborn Screenings Miss Cystic Fibrosis in Non-White Newborns

Prolonged PPI Use Could Increase Respiratory Infection Risk in CF

Could Azithromycin Reduce Cystic Fibrosis Lung Inflammation?

Girl with CF Excited to See Where Kaftrio Takes Her

Golden Ticket: Competition to Create Genetic CF Treatments

The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

“Shades of Psoriasis”: Plaque Psoriasis and Sharing Your Story

Understanding RSV: Why Combatting Ethnic and Age-Related Health Disparities Could Improve Outcomes

We Need Equity and Diversity Within Rare Disease Research

DNA in Color: How Ronya Nelson is Working to Close the Diversity Gap in Genetics - Part 1

Bridging the Diversity Gap in Healthcare

Congratulations to the 2023 Recipients of the Diversity in Lupus Research Awards!

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