Posts by: Larry Luxner

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 ... 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 ... 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 ... Read more

December 2, 2019December 2, 2019

CFF Strives to Improve Lung Transplant Journey for Cystic Fibrosis Patients

cystic fibrosis, News

When it comes to lung transplants, the Cystic Fibrosis Foundation (CFF) admits that for a long time the issue was shrouded in confusion, frustration, and lack of information. But ... Read more

October 7, 2019October 7, 2019

5,000 Expected to Attend Cystic Fibrosis Conference, NACFC 2019, in Nashville

cystic fibrosis, News

The Western Hemisphere’s largest gathering of experts in cystic fibrosis gets underway later this month in Nashville, Tennessee — site of the 33rd annual North American Cystic Fibrosis Conference ... Read more

September 26, 2019September 26, 2019

NORD 2019 Rare Disease Summit Set for Oct. 21-22 in Washington, DC

cystic fibrosis, News

Next month’s annual conference of the National Organization for Rare Disorders (NORD) in Washington, D.C., couldn’t come at a better time, says Marshall Summar, MD, chairman of NORD’s board ... Read more

August 28, 2019October 2, 2019

At NY Genome Center, Legal Expert Presents Ethical Dilemmas in Gene Editing

News

Developing gene therapies for rare diseases is one thing. Creating gene-edited “designer babies” is quite another. German legal expert Timo Minssen outlined the potentially explosive ethical landmines surrounding such ... Read more

August 19, 2019September 19, 2019

Nebraska’s Neena Nizar Seeks Cure for Jansen’s, One of World’s Rarest Diseases

cystic fibrosis

Imagine living your whole life with a painful disease so rare that only 25 others worldwide have what you have. And that you’re one of just six such people ... Read more

August 1, 2019September 11, 2019

Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card

cystic fibrosis

Oklahoma suffers more tornadoes than any other state, has the highest per-capita rate of women in U.S. prisons, ranks second in the number of teen births per 100,000 teenage ... Read more

July 18, 2019July 18, 2019

European Initiative Targets Diagnosis, Treatment of Rare Diseases

cystic fibrosis

A new international consortium based in Paris, and funded largely by the 28-member European Union, intends to speed the diagnosis of rare diseases, while also accelerating the development of ... Read more

Posts by: Larry Luxner

Larry Luxner

CFF Offers Emotional Send-off to Retiring CEO Preston Campbell

Gene Therapy Takes Center Stage at 2019 NORD Summit

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

CFF Strives to Improve Lung Transplant Journey for Cystic Fibrosis Patients

5,000 Expected to Attend Cystic Fibrosis Conference, NACFC 2019, in Nashville

NORD 2019 Rare Disease Summit Set for Oct. 21-22 in Washington, DC

At NY Genome Center, Legal Expert Presents Ethical Dilemmas in Gene Editing

Nebraska’s Neena Nizar Seeks Cure for Jansen’s, One of World’s Rarest Diseases

Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card

European Initiative Targets Diagnosis, Treatment of Rare Diseases

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