Posts by: Larry Luxner

cystic fibrosis, News

In 1960, a 19-year-old woman with cystic fibrosis (CF) made medical history when she gave birth after only 34 weeks of pregnancy. The patient died three months after delivery. In ... Read more

February 25, 2020February 26, 2020

Israeli CF Group Lobbies for Trikafta’s Inclusion in National Health Basket

cystic fibrosis, News

Two years ago, Israel became only the fourth country in the world — after the U.S., Germany, and Belgium — to agree to underwrite the cost of Vertex Pharmaceuticals’ three ... Read more

February 7, 2020February 7, 2020

With Post-Brexit Move to Amsterdam Complete, EMA Renews Rare Disease Focus

News

The gleaming new Dutch headquarters of the European Medicines Agency (EMA), fronting Domenico Scarlattilaan in Amsterdam’s suburban Zuidas business district, finally opened for business last month — just over two ... Read more

January 15, 2020January 15, 2020

Approaches Like Yoga, Along with Meds, Key to Managing CF Pain, Experts Say

cystic fibrosis, News

Tiffany Rich is something of a celebrity in the world of cystic fibrosis (CF). Diagnosed at birth, she graduated college while awaiting a double lung transplant. The co-founder of Salty ... Read more

January 10, 2020January 10, 2020

New CEO Michael Boyle Outlines ‘Cure, Care, Community’ Priorities for CFF

cystic fibrosis, News

Michael Boyle, MD, has laid out a five-year strategic plan for the Cystic Fibrosis Foundation (CFF), following his Jan. 1 appointment as president and CEO of the Maryland-based charity. In ... Read more

January 7, 2020January 7, 2020

Don’t Overlook Importance of Sleep Hygiene, CF Experts Advise

cystic fibrosis, News

People with cystic fibrosis (CF), like their healthy counterparts, often neglect sleep. But that can lead to problems down the road, warned three CF experts at the 2019 North American ... Read more

December 27, 2019December 27, 2019

CFF Programs Strive to Reduce Patients’ Isolation

cystic fibrosis, News

Oregon retiree Carol Birch, 59, considers herself especially lucky to have made it this far in life. “I’ve never felt that I fit the typical role of someone with cystic ... Read more

December 12, 2019January 15, 2020

CFF Offers Emotional Send-off to Retiring CEO Preston Campbell

cystic fibrosis, News

Preston W. Campbell III, MD, recently bid farewell as president and CEO of the Cystic Fibrosis Foundation (CFF) in Nashville — the same city where he began his long association ... Read more

December 10, 2019December 10, 2019

Gene Therapy Takes Center Stage at 2019 NORD Summit

cystic fibrosis

With so much recent publicity surrounding gene therapy, it’s no surprise that the topic was a major focus of the recent 2019 NORD Rare Diseases & Orphan Products Breakthrough Summit. ... Read more

December 5, 2019

HHS Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases

News

Despite skyrocketing healthcare costs, President Trump is committed to protecting the 30 million or so Americans with rare diseases and ensuring timely, affordable access to lifesaving treatments, the nation’s highest-ranking ... Read more