184: An Interview With Aspiring DJ Yuva Gambhir
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Yuva Gambhir, 22, who doesn't let Duchenne muscular dystrophy get in the way of his aspiring career as a DJ.
14m Aug 05, 2025
14m
183: An Interview With Dr. Richard Nowak, Director of the Yale Myasthenia Gravis Clinic
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Richard Nowak, MD, director of the Myasthenia Gravis Clinic at Yale School of Medicine in New Haven, Connecticut.
14m Jul 28, 2025
14m
182: An Interview With Robert Steen of Norway on the Award-Winning Movie 'The Remarkable Life of Ibelin'
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Robert Steen of Oslo, Norway. Steen and his wife, Trude, are the parents of Mats Steen, who died of Duchenne muscular dystrophy (DMD) in 2014. An award-winning documentary, The Remarkable Life of Ibelin, is based on their son's story.
13m Jul 23, 2025
13m
181: An Interview With Dr. Carolina Barnett-Tapia, Associate Professor of Neurology at the University of Toronto, on MG Treatment
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Carolina Barnett-Tapia, MD PhD, an associate professor of neurology at the University of Toronto, about how myasthenia gravis is treated throughout the Western Hemisphere.
13m Jul 14, 2025
13m
180: An Interview With Dr. Angela Vincent, Winner of the Myasthenia Gravis Foundation of America's First Lifetime Achievement Award
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews British scientist Angela Vincent, winner of the first-ever Lifetime Achievement Award from the Myasthenia Gravis Foundation of America.
13m Jul 08, 2025
13m
179: An Interview With Dr. Daniel Grant, VP and Global Program Head at Novartis
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Daniel Grant, MD, vice president and global program head of neuroscience and gene therapy at Swiss pharma giant Novartis, on emerging therapies for SMA.
13m Jul 02, 2025
13m
178: An Interview With Ashley Stanley-Copeland, MD, of Dell Children's Medical Center in Austin, Texas
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Ashley Stanley-Copeland, MD, of Dell Children's Medical Center in Austin, Texas, on therapeutic options available to patients with Duchenne muscular dystrophy (DMD).
15m Jun 26, 2025
15m
177: An Interview With Dr. Sithara Ramdas on Neonatal and Juvenile Myasthenia Gravis
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews pediatric neurologist Sithara Ramdas, MD, of Oxford Children's Hospital in England, on neonatal and juvenile myasthenia gravis.
12m Jun 20, 2025
12m
176: An Interview With Lyza Weisman on Living With Spinal Muscular Atrophy
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lyza Weisman, who has spinal muscular atrophy type 2, about how she copes with progressive loss of muscle function.
15m Jun 18, 2025
15m
175: An Interview With Allucent's Marcus Delatte, PhD, on Using Cannabinoids to Treat Patients With Rare Seizure Disorders
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Marcus Delatte, PhD, on how the versatile cannabis plant offers innovative treatments for children with Dravet syndrome and Lennox-Gestaut syndrome.
10m Jun 13, 2025
10m
174: An Interview With Lucy Culp, VP of State Government Affairs at the Leukemia & Lymphoma Society
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lucy Culp, vice-president of state government affairs at the Leukemia & Lymphoma Society, on top issues of importance to patients with rare blood cancers.
11m Jun 09, 2025
11m
173: An Interview With Amyloidosis Patient Dan Lier, a Partner With the Nonprofit Group 'Somebody To Talk To'
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."
11m May 26, 2025
11m
172: An Interview With Huntington Disease Patient and Advocate Lauren Holder of Help 4 HD
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.
12m May 19, 2025
12m
171: An Interview WIth Antonella Favit-Van Pelt, MD, PhD, on Neuromodulation to Treat Multiple Sclerosis
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.
16m May 15, 2025
16m
170: An Interview With Joyce Kullman, Executive Director of the Vasculitis Foundation
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Joyce Kullman, executive director of the Vasculitis Foundation, duirng Vasculitis Awareness Month.
12m May 08, 2025
12m
169: An Interview With Chris Lewis, Son of Famous Comedian Jerry Lewis
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.
14m May 08, 2025
14m
170: An Interview With Chris Lewis, Son of Famous Comedian Jerry Lewis
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.
14m May 08, 2025
14m
168: An Interview WIth Lisa Butler, CEO of the GBS-CIDP Foundation
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).
13m Apr 30, 2025
13m
167: An Interview With MDA Patient Advocate Donavon Decker, WInner of the 2025 MDA Legacy Award for Community Impact in Research
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.
13m Apr 28, 2025
13m
166: An Interview With MDA 2025 Patient Ambassador Lily Sander
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.
15m Apr 15, 2025
15m
165: An Interview With Duchenne Expert Katherine Mathews, MD, of the University of Iowa
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.
11m Apr 11, 2025
11m
164: An Interview With Generalized Pustular Psoriasis Expert Arash Mostaghimi, MD
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).
9m Apr 07, 2025
9m
163: An Interview With Clinical Hematologist and Professor Dr. Luke Chen
Rare Disease Advisor correspondent Tori Rodriguez interviews clinical hematologist and professor Luke Chen, MD, about IgG4-related disease and how it mimics various malignancies.
16m Apr 01, 2025
16m
162: An Interview With John Anderson, MD, Expert on Hereditary Angioedema
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.
11m Mar 17, 2025
11m
161: An Interview With Retired NFL Athlete and Amyloidosis Patient Advocate Art Still
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.
17m Mar 13, 2025
17m
160: An Interview With Heather Landau, MD, on the Latest Therapies for Amyloidosis
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.
17m Mar 06, 2025
17m
158: An Interview With Hereditary Angioedema Expert Dr. Timothy Craig
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.
14m Feb 27, 2025
14m
158: An Interview With Dr. Sangeetha Venugopal on the relationship between smoking and myelodysplastic syndromes (MDS)
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).
12m Feb 20, 2025
12m
157: An Interview With Andrea Renzi, a Patient Advocate for Women Affected by HDFN
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).
12m Feb 12, 2025
12m
156: An Interview With Dr. James Bussel on Fetal and Neonatal Alloimmune Thrombocytopenia (FNAIT)
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).
13m Feb 05, 2025
13m
155: An Interview With Rigoberto Garcia, Executive Director of the Hemophilia Foundation of Southern California
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.
15m Jan 31, 2025
15m
154: An Interview With AATD Patient Kristin Hatcher of the Global Liver Institute
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.
13m Jan 24, 2025
13m
153: An Interview With Terry Jo Bichell, PhD, Founder and Director of CombinedBrain
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 transparent about its decisions.
16m Jan 17, 2025
16m
152: An Interview With Erin Collins, Founder of the Chasing Rainbows Foundation
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.
15m Jan 06, 2025
15m
151: An Interview With NMOSD Expert Dean Wingerchuk, MD, of the Mayo Clinic
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.
10m Jan 02, 2025
10m
150: An Interview With Beloved Huntington Disease Activist Jimmy Pollard
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.
12m Dec 27, 2024
12m
149: An Interview With Clinical Psychologist Rosalind Kalb, PhD, of Can Do-MS
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.
14m Dec 18, 2024
14m
148: An Interview With Huntington Disease Patient Activist Tanita Allen
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.
11m Dec 16, 2024
11m
147: An Interview With Jean Elwing, MD, a Pulmonary Hypertension Expert at the University of Cincinnati
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.
14m Dec 03, 2024
14m
146: An Interview With Payel Gupta, MD, on the Importance of Social Media in Healthcare
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.
9m Nov 27, 2024
9m
145: An Interview With Sandy Siegel, Founder and President of the Siegel Rare Neuroimmune Association
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 neuroimmune diseases including neuromyelitis op...
16m Nov 22, 2024
16m
144: An Interview With Anastasia Vishnevetsky, MD, MPH, on the Use of Cannabis to Treat NMOSD
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.
17m Nov 14, 2024
17m
143: An Interview With Ignacio Muñoz-Sanjuan, PhD, President and Founder of Factor-H
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.
16m Nov 05, 2024
16m
142: An Interview With Amy Case, MD, Chief Medical Officer of the Pulmonary Fibrosis Foundation
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.
16m Nov 04, 2024
16m
141: An Interview WIth Steve Van Wormer, Cofounder and Director of the Phaware Global Association
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.
12m Oct 21, 2024
12m
140: An Interview With Victor Test, MD, Chair of the Pulmonary Vascular Disease Program at Texas Tech School of Medicine in Lubbock
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.
13m Oct 16, 2024
13m
139: An Interview With Drew Harris, MD, Expert on Black Lung Disease
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.
13m Oct 09, 2024
13m
138: An Interview With Mahesh Desai, PhD, of the Luxembourg Institute of Health
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.
10m Sep 25, 2024
10m
137: An Interview With Karin Hoelzer, DVM, PhD, Senior Director of Policy and Regulatory Affairs at NORD
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 to expire on September 30, 2024.
10m Sep 18, 2024
10m
136: An Interview With Susan Ward, PhD, Founder and Executive Director of the Collaborative Trajectory Analysis Project (cTAP)
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.
16m Aug 28, 2024
16m