Author Archives: Larry Luxner

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

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 Cystic Fibrosis Conference in Nashville. More than half of all CF patients have sleep complaints, said pulmonologist Eliot…

CFF Programs Strive to Reduce Patients’ Isolation

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 fibrosis (CF),” Birch told attendees at the 2019 North American Cystic Fibrosis Conference (NACFC) in Nashville, Tennessee. Diagnosed at…

CFF Offers Emotional Send-off to Retiring CEO Preston Campbell

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 with the disease 30 years ago as a pediatric pulmonologist at Vanderbilt University’s Cystic Fibrosis (CF) Care Center.

Gene Therapy Takes Center Stage at 2019 NORD Summit

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. From diagnosis and clinical trial design to manufacturing, pricing strategies, and ethical concerns, gene therapy — both its high…

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

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 health official said. “We have to think about how our financing system can protect those with serious and rare illnesses.


Featured Column

The Benefits of Being Sick

A banner for Lara's column, depicting a car on a road trip winding through a forest.
As columnist Lara Govendo reflects on her journey through CF and transplant, she realizes there are a surprising number of benefits.

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