Larry Luxner, senior correspondent for Rare Disease Advisor, interviews amyloidosis patient and former basketball player Dan Lier, a partner with the nonprofit group Somebody To Talk To, about his new "Rare Disease Playbook."By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lauren Holder, an activist and patient with Huntington disease, as well as producer and host of the podcast series Help 4 HD Live.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Antonella Favit-Van Pelt, MD, PhD, chief medical officer at Helius Medical, on the potential of neuromodulation to treat people with multiple sclerosis.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Joyce Kullman, executive director of the Vasculitis Foundation, duirng Vasculitis Awareness Month.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Chris Lewis, whose father, Jerry Lewis, was not only among the most famous comedians of the 20th century but also a tireless advocate for people with muscular dystrophy.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Chris Lewis, whose father, Jerry Lewis, was not only among the most famous comedians of the 20th century but also a tireless advocate for people with muscular dystrophy.By Rare Care Podcast

Sorry about the wait Folks ! On this post Easter, Easter episode (6) I am joined by another good friend where relive our adventure of river walking up the Eastern Waitewaewae River to Island Forks and all the reasons why, if you have not been there or have not heard of it, you should go check it out ! I am then, as always joined by a special guest …

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lisa Butler, CEO of the GBS-CIDP Foundation, on what her organization is doing for patients with chronic inflammatory demyelinating polyneuropathy (CIDP).By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, talks to Donavon Decker, who has limb-girdle muscular dystrophy. Decker is the winner of the 2025 MDA Legacy Award for Community Impact in Research.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews 17-year-old Lily Sander with Charcot-Marie-Tooth disease. The Muscular Dystrophy Association has named Sander its 2025 MDA Patient Ambassador.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Katherine Mathews, MD, winner of the Muscular Dystrophy Association's 2025 Legacy Award for Achievement in Clinical Research for her contributions to understanding and treating genetic disorders affecting the neuromuscular system.…

On this episode of Tararua Fever we are slip'n and slid'n to the Forks in more ways than one - We start with a quick and small Tararua101 on the main rivers of the Tararua Ranges - But do not worry, the 101 will extend a bit more each ep on different topics. I am then joined by my good friend Georgia about our Winter trip a while ago to Neil Forks …

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Arash Mostaghimi, MD, an associate professor of dermatology and a practicing physician at Boston's Brigham and Women's Hospital. Dr. Mostaghimi is a recognized expert on generalized pustular psoriasis (GPP).By Rare Care Podcast

Rare Disease Advisor correspondent Tori Rodriguez interviews clinical hematologist and professor Luke Chen, MD, about IgG4-related disease and how it mimics various malignancies.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews John Anderson, MD, chief research officer at AllerVie Clinical Research, on the complexities of diagnosing and treating hereditary angioedema.By Rare Care Podcast

Join us for Episode 4, ‘Ampin for Campin’ where my best mate, Al, and I, go on a tramp and the camp out for the night. We face the literal ups and downs of the rugged Tarurua ranges, stare down in to the abyss (cliff tops) from great heights, come face to face with possum monsters and more ! I am then joined by a very cool member of the Tararua Tra…

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Art Still, former defensive end for the Kansas City Chiefs and an NFL Hall of Famer who's now a patient advocate dedicated to raising awareness about amyloidosis.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews oncologist-hematologist Heather Landau, MD, of Sloan Kettering Memorial Cancer Center in New York City, for National Amyloidosis Awareness Month.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Timothy Craig, DO, a tenured professor of medicine, pediatrics and biomedical sciences at Pennsylvania State University in Hershey. Dr. Craig has been researching hereditary angioedema for 30 years.By Rare Care Podcast

In Episode 3 of Tararua Fever, I am joined by my lovely darling to discuss a ‘coast-to-coast’ trip we did a year ago that went from the Holdsworth road end in the Wairarapa, to up and over Maungahuka and out to the Kapiti Coast. We discuss the literal and metaphorical highs and lows of that trip and some of the particularly gnarly sections of comin…

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sangeetha Venugopal, MD, assistant professor of clinical medicine at the University of Miami's Sylvester Comprehensive Cancer Center. Dr. Venugopal speaks on how smoking worsens outcomes for patients with a group of blood cancers known as myelodysplastic syndromes (MDS).…

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Andrea Renzi, a New Hampshire mother and patient advocate whose family has been affected by hemolytic disease of the fetus and newborn (HDFN).By Rare Care Podcast

In Episode 2 of Tararua Fever I explore the difficulty of planning a nice easy stroll in the Tararua Ranges. I speak of a previous trip with some friends where we had to slightly pivot on the original plan. I look into what we were looking for in an ‘easy trip’ for the weekend and a lesson learnt for me in not underestimating distances and difficul…

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews James Bussel, MD, emeritus professor of pediatrics, medicine, and obstetrics and gynecology at New York's Weill Cornell Medicine. The topic of their discussion is nipocalimab as a potential treatment for fetal and neonatal alloimmune thrombocytopenia (FNAIT).…

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Rigoberto Garcia, executive director of the Hemophilia Foundation of Southern California, about the difficulty minorities—especially undocumented Hispanics—have in accessing treatment for their bleeding disorders.By Rare Care Podcast

In this first episode of Tararua Fever I introduce the concept of what this podcast is all about, who I am, why I love tramping in the Tararua Ranges and a segment on a previous tramp of the Northern Crossing. I then host the first interview with a very special guest about a another past trip we have done. The quality of the recordings below averag…

Larry Luxner, senior correspondent for Rare DIsease Advisor, interviews Kristin Hatcher, director of pediatric and rare diseases at the Global Liver Institute. Hatcher has both alpha-1 antitrypsin deficiency (AATD) and Von Willebrand disease, a rare clotting disorder.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Terry Jo Bichell, PhD, founder and director of CombinedBrain, which advocates for patients with 110 neurogenetic diseases. Dr. Bichell is part of a panel that's studying how the US Food and Drug Administration can do a better job of speeding up clinical trials and becoming more…

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Erin Collins, founder of the Chasing Rainbows Foundation in North Carolina's Outer Banks. The charity raises awareness of HDFN and other rare pregnancy-related diseases.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Dean Wingerchuk, MD, speaks on the potential for treating neuromyelitis optica spectrum disorder (NMOSD) with stem-cell therapy.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jimmy Pollard, who for the past 38 years has advocated on behalf of people around the world affected by Huntington disease.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews clinical psychologist Rosalind Kalb, lead senior programs consultant for Can-Do MS, a Colorado-based nonprofit health and wellness organization.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Tanita Allen, a Black woman with Huntington disease who has made it her mission to increase awareness about the disorder and its devastating impact on patients regardless of their racial or ethnic background.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jean Elwing, MD, a professor of medicine and director of the Pulmonary Hypertension Program at Ohio's University of Cincinnati.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare DIsease Advisor, interviews Payel Gupta, MD, on social media platforms such as TikTok, Facebook and YouTube, and their importance in reaching today's public—and fighting online misinformation.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sandy Siegel, founder and president of the Siegel Rare Neuroimmune Association. Siegel started the charity 30 years ago with his wife, Pauline, after she was diagnosed with transverse myelitis. After Pauline's death in 2017, the organization expanded to include five other rare …

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Anastasia Vishnevetsky, MD, MPH, of Massachusetts General Hospital and Harvard Medical School. Dr. Vishnevetsky is heading a groundbreaking clinical trial of the cannabinoid spray nabiximols in treating the symptoms of NMOSD.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Ignacio Muñoz-Sanjuan, PhD, the president and founder of Factor-H—a Los Angeles-based nonprofit organization that works to alleviate extreme poverty among people with Huntington disease in Venezuela, Colombia, and Peru.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Amy Case, MD, chief medical officer of the Pulmonary Fibrosis Foundation, about the importance of passing the bipartisan Supplemental Oxygen Access Reform (SOAR) Act, which is currently stalled in Congress.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Steve Van Wormer, cofounder and director of the Phaware Global Association. Van Wormer became a patient advocate after his late son, Lucas, was diagnosed with pulmonary hypertension at age 4.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Victor Test, MD, an expert in pulmonary arterial hypertension (PAH). Dr. Test is a professor of medicine and chair of the pulmonary vascular disease program at Texas Tech School of Medicine in Lubbock.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews pulmonologist Drew Harris, MD, an associate professor of medicine at the University of Virginia in Charlottesville. Dr. Harris is also medical director of the Black Lung Program at Stone Mountain Health Services, in the heart of southwestern Virginia's coal-mining industry.…

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Mahesh Desai, PhD, of the Luxembourg Institute of Health’s Department of Infection and Immunity. Dr. Desai discusses how healthy gut bacteria may reduce the side effects of chemotherapy in cancer patients.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Karin Hoelzer, DVM, PhD, senior director of policy and regulatory affairs at the National Organization for Rare Disorders (NORD). Dr. Hoelzer discusses the importance of convincing the US Congress to renew the Rare Pediatric Disease Priority Review Voucher Program, which is set…

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Susan Ward, PhD, founder and executive director of the Collaborative Trajectory Analysis Project (cTAP), which seeks to broaden patient eligibility for clinical trials in Duchenne muscular dystrophy.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Taylor Kane, founder and executive director of 'Remember the Girls.' The charity advocates for female carriers of X-linked rare disorders including Duchenne muscular dystrophy and hemophilia.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews neurologist Jeffrey A. Cohen, MD, of Ohio's Cleveland Clinic on the latest developments in cellular therapies to treat multiple sclerosis.By Rare Care Podcast

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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jacquelyn Bainbridge, DPharm, a neurology professor at the University of Colorado in Aurora, on the benefits of medical cannabis in treating multiple sclerosis.By Rare Care Podcast

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