Larry Luxner

Senior Correspondent, RareDiseaseAdvisor
Miami native Larry Luxner, a veteran journalist and photographer, has reported from more than 100 countries in Latin America, Africa, Eastern Europe, the Middle East and Asia for a variety of news outlets. He lived for many years in San Juan, Puerto Rico, and the Washington, D.C., area before relocating to Israel in January 2017. Prior to joining RareDiseaseAdvisor, Larry spent four years with BioNews Services writing news and features about the rare disease community from his base in Tel Aviv.

All articles by Larry Luxner

FDA Chief Janet Woodcock: ‘We Have a Long Way to Go’ in Rare Disease

The US Food and Drug Administration (FDA) has been preoccupied with COVID-19 for nearly 2 years. But that hasn’t distracted the agency from ensuring the development of therapies for rare disease patients, said Acting FDA Commissioner Janet Woodcock, MD. Dr. Woodcock spoke on October 19, 2021, the second day of the 2-day virtual National Organization for…

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GIST, Cholangiocarcinoma Groups Work to Educate Clinicians on Rare Cancers

Gastrointestinal stromal tumor (GIST) and cholangiocarcinoma are very different types of rare cancers, but they share a crucial trait: few people have ever heard of them. Even so, about 22% of all cancer cases diagnosed worldwide are considered rare, making them collectively far more common than breast cancer (16% of the total), colorectal cancer (15%),…

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COVID-19 Could Have Long-Lasting Impact on Research Into Rare Diseases

COVID-19 could have profound implications on the way rare disease researchers conduct clinical trials, long after the pandemic itself subsides. During the pandemic, “the collaborations were incredible, and the ability to mobilize multidisciplinary groups was unlike anything I’ve ever seen before,” said Jeanine D’Armiento, MD, PhD, board chair of the Alpha-1 Foundation, a Miami, Florida-based…

Treat Rare Diseases With the Same Urgency as COVID, Expert Panel Urges

The US public health system should prioritize rare diseases in the same way it has with COVID-19, said Christopher Austin, MD, founding director of the National Center for Advancing Translational Science (NCATS), a division of the National Institutes of Health (NIH). He said that as director of NCATS when the pandemic hit in early 2020,…

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Dr. Durhane Wong-Rieger on the Challenges Faced by Rare Disease Patients in Canada

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Durhane Wong-Rieger, PhD, president and CEO of the Canadian Organization for Rare Disorders (CORD) and chair of Rare Diseases International (RDI). Dr. Wong-Rieger talks about the challenges of diagnosing and treating diseases in Canada, as well as advancing access to therapies around the globe. Read the…

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An Update on LAL-D With Dr. Paul Martin of Nationwide Children’s Hospital

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Paul T. Martin, PhD, principal investigator at the Center for Gene Therapy at Nationwide Children’s Hospital in Columbus, Ohio. Dr. Martin has been at the forefront of research into potential gene therapies for lysosomal acid lipase deficiency, or LAL-D. Read the full article: Gene Therapy May…

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