Rare Care Podcast

Jan 31 2025 164 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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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.

151: An Interview With NMOSD Expert Dean Wingerchuk, MD, of the Mayo Clinic

Jan 02 2025 10 mins

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.

150: An Interview With Beloved Huntington Disease Activist Jimmy Pollard

Dec 27 2024 12 mins

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.

149: An Interview With Clinical Psychologist Rosalind Kalb, PhD, of Can Do-MS

Dec 18 2024 13 mins

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.

148: An Interview With Huntington Disease Patient Activist Tanita Allen

Dec 16 2024 11 mins

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.

147: An Interview With Jean Elwing, MD, a Pulmonary Hypertension Expert at the University of Cincinnati

Dec 03 2024 13 mins

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.

146: An Interview With Payel Gupta, MD, on the Importance of Social Media in Healthcare

Nov 27 2024 9 mins

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.