April 2, 2021March 31, 2021
After 5 Years and a Double-lung Transplant, I’m Back at Work
Columns, Valiant Voice – a Column by Lara Govendo
Our vulnerabilities should be celebrated, but they seldom are in the workplace. Hiding our disabilities may feel like the only ... Read more
April 2, 2021April 2, 2021
One Walk/Run ‘Shuttle Test’ Captures Exercise Capacity in CF Children, Study Says
News
Disease progression and the overall health of young people with cystic fibrosis (CF) can be evaluated by ... Read more
April 1, 2021April 1, 2021
New LungQ Software Can Analyze CF Airway Problems in Seconds, Thirona Says
cystic fibrosis, News
Thirona announced it has developed a new software program that can quickly detect and quantify lung anomalies in cystic fibrosis ... Read more
March 31, 2021March 31, 2021
Life Edit Will Use CFF Award to Explore Gene-editing Technology
News
The Cystic Fibrosis Foundation (CFF) is awarding Life Edit Therapeutics up to $400,000 to explore its new gene-editing technology to ... Read more
March 30, 2021March 26, 2021
Unpopular Opinion: I Know What I Need, but the Healthcare System Doesn’t
Columns, Life in the Grey – a Column by Bailey Anne Vincent
This is what I need. I’m going to tell you instead of my doctors, because that’s the life of a ... Read more
March 30, 2021March 30, 2021
Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds
News, syndicated
As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an ... Read more
March 30, 2021March 30, 2021
Australia Approves Trikafta for Patients, 12 and Older, With Common Mutation
cystic fibrosis
Health regulators in Australia have approved Trikafta (elexacaftor/tezacaftor/ivacaftor) to treat people with cystic fibrosis (CF), ages 12 years ... Read more
March 29, 2021March 29, 2021
CHMP Favors Kaftrio to Treat CF Patients in EU Starting at Age 12
News
A European Medicines Agency (EMA) committee favors extending the label for Kaftrio (ivacaftor/tezacaftor/elexacaftor), in combination with Kalydeco (ivacaftor), to treat cystic fibrosis ... Read more
March 26, 2021March 24, 2021
Every March, My Body Remembers the Trauma of Almost Dying
Columns, Valiant Voice – a Column by Lara Govendo
March is a heavy month. Like clockwork, physical and emotional symptoms seem to erupt out of nowhere. Four years ago ... Read more
March 26, 2021March 26, 2021
Trikafta Found Safe, Effective for Children Ages 6–11
cystic fibrosis
Trikafta, a medication that combines three different therapies (elexacaftor/tezacaftor/ivacaftor), is safe and effective in children with cystic fibrosis ... Read more
March 25, 2021March 25, 2021
CF Families in Ontario Send Video Plea for Access to Vertex Therapies
cystic fibrosis
Parents of children and young adults with cystic fibrosis (CF) in Ontario sent a video appeal to the head of ... Read more
March 24, 2021March 24, 2021
My Life (and Death) Is More Than Statistics and Dead Dreams
Columns, Victorious - a Column by Brad Dell
It’s not my birthday or my lung transplant anniversary or anything. But today, I’m thinking about being old-ish. I’m thinking ... Read more

April 2, 2021March 31, 2021

After 5 Years and a Double-lung Transplant, I’m Back at Work

Columns, Valiant Voice – a Column by Lara Govendo

Our vulnerabilities should be celebrated, but they seldom are in the workplace. Hiding our disabilities may feel like the only solution at times. After losing my previous job, I never ... Read more

April 2, 2021April 2, 2021

One Walk/Run ‘Shuttle Test’ Captures Exercise Capacity in CF Children, Study Says

News

Disease progression and the overall health of young people with cystic fibrosis (CF) can be evaluated by putting them through the modified shuttle test (MST) once, as ... Read more

April 1, 2021April 1, 2021

New LungQ Software Can Analyze CF Airway Problems in Seconds, Thirona Says

cystic fibrosis, News

Thirona announced it has developed a new software program that can quickly detect and quantify lung anomalies in cystic fibrosis (CF) patients, including those beyond the capacity of a doctor ... Read more

March 31, 2021March 31, 2021

Life Edit Will Use CFF Award to Explore Gene-editing Technology

News

The Cystic Fibrosis Foundation (CFF) is awarding Life Edit Therapeutics up to $400,000 to explore its new gene-editing technology to develop treatments for certain patients with cystic fibrosis (CF) who cannot ... Read more

March 30, 2021March 26, 2021

Unpopular Opinion: I Know What I Need, but the Healthcare System Doesn’t

Columns, Life in the Grey – a Column by Bailey Anne Vincent

This is what I need. I’m going to tell you instead of my doctors, because that’s the life of a chronic patient. Even though I will tell my team, and ... Read more

March 30, 2021March 30, 2021

Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds

News, syndicated

As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking. But exactly how expensive — in terms of ... Read more

March 30, 2021March 30, 2021

Australia Approves Trikafta for Patients, 12 and Older, With Common Mutation

cystic fibrosis

Health regulators in Australia have approved Trikafta (elexacaftor/tezacaftor/ivacaftor) to treat people with cystic fibrosis (CF), ages 12 years and older, who have at least one copy of the F508del mutation ... Read more

March 29, 2021March 29, 2021

CHMP Favors Kaftrio to Treat CF Patients in EU Starting at Age 12

News

A European Medicines Agency (EMA) committee favors extending the label for Kaftrio (ivacaftor/tezacaftor/elexacaftor), in combination with Kalydeco (ivacaftor), to treat cystic fibrosis (CF) patients 12 and older who have at least one copy of ... Read more

March 26, 2021March 24, 2021

Every March, My Body Remembers the Trauma of Almost Dying

Columns, Valiant Voice – a Column by Lara Govendo

March is a heavy month. Like clockwork, physical and emotional symptoms seem to erupt out of nowhere. Four years ago this month I almost died. On an unconscious level, our ... Read more

March 26, 2021March 26, 2021

Trikafta Found Safe, Effective for Children Ages 6–11

cystic fibrosis

Trikafta, a medication that combines three different therapies (elexacaftor/tezacaftor/ivacaftor), is safe and effective in children with cystic fibrosis (CF) ages 6 to 11 who have certain genetic mutations, results from ... Read more

March 25, 2021March 25, 2021

CF Families in Ontario Send Video Plea for Access to Vertex Therapies

cystic fibrosis

Parents of children and young adults with cystic fibrosis (CF) in Ontario sent a video appeal to the head of their province’s government, asking the premier to quickly expand prescription ... Read more

March 24, 2021March 24, 2021

My Life (and Death) Is More Than Statistics and Dead Dreams

Columns, Victorious - a Column by Brad Dell

It’s not my birthday or my lung transplant anniversary or anything. But today, I’m thinking about being old-ish. I’m thinking about how Mom realized my life expectancy in college biology, ... Read more

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