Posts by: Larry Luxner

cystic fibrosis

Cash-strapped governments across the 28-member European Union are struggling to control runaway healthcare expenditures — at exactly the same time as the promise of new but expensive therapies to ... Read more

December 5, 2018December 5, 2018

CF Patients Benefit from Virtual Learning, New Educational Programs

cystic fibrosis, News

It’s one of the ironies of cystic fibrosis (CF) conferences that the patients who most urgently need the information are discouraged from attending for fear of cross-contamination. Under infection ... Read more

November 28, 2018November 28, 2018

Study Reveals How Cystic Fibrosis Affects Young Women’s Sexual Health

cystic fibrosis, News

Girls with cystic fibrosis (CF) reach puberty six to eight months later than healthy girls, about 16 percent of young females with CF encounter problems during sex, and 78 percent ... Read more

October 29, 2018October 29, 2018

#NORDSummit – Major Issues on Table for Rare Disease Patients in US as Midterm Elections Approach

cystic fibrosis, News

With the U.S. midterm elections now less than two weeks away, patient advocacy groups are solidly focused on a range of hot-button issues, from the Orphan Drug Tax Creditand ... Read more

October 19, 2018October 19, 2018

#NACFC2018 — CFF Announces $100 Million ‘Infection Research Initiative’

cystic fibrosis, News

The Cystic Fibrosis Foundation (CFF) will spend $100 million over the next five years to fund research aimed at fighting infections in patients with cystic fibrosis (CF) — a problem ... Read more

October 9, 2018October 9, 2018

Advocacy Groups, Doctors Question Rising Prices of Rare Disease Treatments

cystic fibrosis

Half a year has gone by since disgraced pharma executive Martin Shkreli was sentenced to seven years in federal prison for securities and wire fraud while heading San Diego-based ... Read more

September 25, 2018September 26, 2018

#NACFC — Denver to Host World’s Top Cystic Fibrosis Experts in October for Conference

cystic fibrosis, News

A record 5,000 people from dozens of countries will gather next month in Denver for the 32nd Annual North American Cystic Fibrosis Conference (NACFC) — the world’s largest event focused on ... Read more

September 24, 2018September 24, 2018

#NORDSummit – More Than 700 Expected to Attend Oct. 15-16 Rare Disease Summit in Washington

cystic fibrosis

More than 700 medical experts, pharmaceutical executives, patient advocates, and others are expected to converge on Washington, D.C., next month for the 2018 NORD Rare Diseases & Orphan Products ... Read more

August 20, 2018August 20, 2018

Israeli CF Patient Advocacy Group Urges Better Access to Screening, Key Therapies

cystic fibrosis, News

When Shira Zagury joined the Cystic Fibrosis Foundation of Israel as CEO eight years ago, only one cystic fibrosis (CF) patient sat on the nine-member board of directors. Today, five of ... Read more

June 27, 2018June 27, 2018

#ECFS2018 – With CF Patients Living Longer, Fertility and Childbirth Concerns Take Center Stage

cystic fibrosis, News

Cystic fibrosis (CF), once an exclusively pediatric disease, is clearly one no longer. Of the 32,000 or so Europeans registered with CF, nearly half are more than 18 years ... Read more

Posts by: Larry Luxner

Larry Luxner

Rising Healthcare Costs Strain EU Budgets Even as New Therapies Flourish

CF Patients Benefit from Virtual Learning, New Educational Programs

Study Reveals How Cystic Fibrosis Affects Young Women’s Sexual Health

#NORDSummit – Major Issues on Table for Rare Disease Patients in US as Midterm Elections Approach

#NACFC2018 — CFF Announces $100 Million ‘Infection Research Initiative’

Advocacy Groups, Doctors Question Rising Prices of Rare Disease Treatments

#NACFC — Denver to Host World’s Top Cystic Fibrosis Experts in October for Conference

#NORDSummit – More Than 700 Expected to Attend Oct. 15-16 Rare Disease Summit in Washington

Israeli CF Patient Advocacy Group Urges Better Access to Screening, Key Therapies

#ECFS2018 – With CF Patients Living Longer, Fertility and Childbirth Concerns Take Center Stage

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