Posts by: Larry Luxner

cystic fibrosis

Madeline Collin, a 24-year-old activist with Gaucher disease, worries that patients like her will suffer deeply if Britain leaves the European Union (EU), as scheduled, at the end of ... Read more

March 11, 2019March 11, 2019

Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist

cystic fibrosis, News

With each new advance in medicine comes ethical dilemmas, from fertility treatments and newborn screening, to vaccinations, gene therapies and euthanasia. But rare diseases and the expensive therapies needed ... Read more

February 25, 2019February 25, 2019

WODC 2019 Organizers Expect 1,200 to Attend Rare Disease Conference in April

cystic fibrosis

The world’s biggest gathering of rare disease researchers, patient groups, pharmaceutical executives, and government officials is planned for April 10–12 in a Washington, D.C., suburb. Some 1,200 people have ... Read more

February 20, 2019March 5, 2019

Vienna to Host RARE2019 Meeting on Rare Diseases

cystic fibrosis

About 100 scientists, researchers, pharmaceutical executives, and others will converge on Austria’s capital city early next month for the 2nd International Congress on Advanced Treatments in Rare Diseases. The ... Read more

February 15, 2019February 27, 2019

CFF Plans Feb. 28 ‘ResearchCon’ Virtual Event for Cystic Fibrosis Patients

cystic fibrosis, News

Later this month, the Cystic Fibrosis Foundation (CFF) will host ResearchCon, its first virtual event dedicated to cystic fibrosis (CF) science and research. Some 480 people have registered for the Feb. 28 ... Read more

February 7, 2019February 18, 2019

Medical Marijuana ‘Can Help Everyone,’ Says Director at Maryland Cannabis Facility

cystic fibrosis

Warning the reporter accompanying him not to take any pictures, veteran horticulturalist Michael Castleman punches an electronic code and unlocks the door to Room 209, nicknamed the “Mother Room.” ... Read more

February 5, 2019February 14, 2019

Utah’s Somer Love Battles CF with Kindness and Strength

cystic fibrosis, News

Somer Love is sitting at her favorite local hangout, the Landmark Grill in suburban Midvale, happily devouring her lunch. Looming on the horizon to the east are Utah’s majestic ... Read more

January 22, 2019January 31, 2019

CF Patients Navigate Increasingly Complex Health Insurance Quagmire

cystic fibrosis, News

Florida resident Megan Willis has cystic fibrosis (CF), and she’s not getting better. But that didn’t stop authorities last March from deciding otherwise, and denying her access to Medicaid ... Read more

January 16, 2019January 23, 2019

CFF’s Preston Campbell: 2019 is a ‘Pivotal Year’ for CF Therapies

cystic fibrosis, News

A baby born with cystic fibrosis (CF) today can now expect to live a median 44 years, says Preston W. Campbell, MD, president and CEO of the Cystic Fibrosis ... Read more

December 20, 2018December 20, 2018

Rising Healthcare Costs Strain EU Budgets Even as New Therapies Flourish

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

Posts by: Larry Luxner

Larry Luxner

Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn

Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist

WODC 2019 Organizers Expect 1,200 to Attend Rare Disease Conference in April

Vienna to Host RARE2019 Meeting on Rare Diseases

CFF Plans Feb. 28 ‘ResearchCon’ Virtual Event for Cystic Fibrosis Patients

Medical Marijuana ‘Can Help Everyone,’ Says Director at Maryland Cannabis Facility

Utah’s Somer Love Battles CF with Kindness and Strength

CFF’s Preston Campbell: 2019 is a ‘Pivotal Year’ for CF Therapies

Rising Healthcare Costs Strain EU Budgets Even as New Therapies Flourish

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