Rare Care Podcast

Mar 13 2025 170 ep. 12 mins 10

Rare Care Podcast artwork

Rare Disease Advisor's Rare Care Podcast features exclusive interviews with experts and stakeholders from the rare disease community.

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161: An Interview With Retired NFL Athlete and Amyloidosis Patient Advocate Art Still

Mar 13 2025 17 mins

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.

160: An Interview With Heather Landau, MD, on the Latest Therapies for Amyloidosis

Mar 06 2025 17 mins

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.

158: An Interview With Hereditary Angioedema Expert Dr. Timothy Craig

Feb 27 2025 14 mins

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.

158: An Interview With Dr. Sangeetha Venugopal on the relationship between smoking and myelodysplastic syndromes (MDS)

Feb 20 2025 12 mins

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).

157: An Interview With Andrea Renzi, a Patient Advocate for Women Affected by HDFN

Feb 12 2025 12 mins

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).

156: An Interview With Dr. James Bussel on Fetal and Neonatal Alloimmune Thrombocytopenia (FNAIT)

Feb 05 2025 13 mins

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).

155: An Interview With Rigoberto Garcia, Executive Director of the Hemophilia Foundation of Southern California

Jan 31 2025 15 mins

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.

154: An Interview With AATD Patient Kristin Hatcher of the Global Liver Institute

Jan 24 2025 13 mins

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.

153: An Interview With Terry Jo Bichell, PhD, Founder and Director of CombinedBrain

Jan 17 2025 15 mins

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.

152: An Interview With Erin Collins, Founder of the Chasing Rainbows Foundation

Jan 06 2025 15 mins

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.