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Rare Care Podcast
Rare Care Podcast episodes
- An Interview With Rob Haselberg, an Huntington Patient Advocate Who Has Tested Positive for the Disease
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Rob Haselberg, a Dutch patient advocate for Huntington disease who is heatlhy now, but will develop HD later in life after having tested positive for the incurable, progressive illness.
14 min - An Interview With Herwig Lange, MD, President of the German Huntington Association
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Herwig Lange, MD, a neurologist who has been researching Huntington disease since 1969. Dr. Lange, a proponent of non-drug therapy to improve the lives of HD patients, is also president of the German Huntington Association.
17 min - An Interview With Cathleen Lutz, PhD, Vice President of the Jackson Laboratory's Rare Disease Transactional Center
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Cathleen Lutz, PhD, vice president of the Jackson Laboratory's Rare Disease Transactional Center in Bar Harbor, Maine. Dr. Lutz is leading efforts to implement the latest genomic editing techniques to address the actual genetic defect in Friedreich ataxia, with the goal of translating it to the clinic.
15 min - An Interview With Heather Stefanski, MD, PhD, Vice President of Medical Services at the National Marrow Donor Program's Be The Match
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Heather Stefanski, MD, PhD, vice president of medical services at the National Marrow Donor Program / Be The Match. Previously, she was an associate professor of pediatrics at the University of Minnesota. Dr. Stefanski's research focuses on children with life-threatening blood and immune system disorders.
13 min - An Interview With Astri Arnesen, President and CEO of the European Huntington Association
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Astri Arnesen, president and CEO of the European Huntington Association (EHA), about current research trends and the potential for gene therapy to treat Huntington disease ahead of EHA's 2023 conference in Blankenberge, Belgium.
17 min - An Interview With Derek de Winter, MD, Coordinating Investigator of the DIONYSUS Study
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Derek de Winter, coordinating investigator of the DIONYSUS study, a Dutch-based international retrospective registry on hemolytic disease of the fetus and newborn (HDFN).
12 min - An Interview With Juan Valle, MB ChB, Chief Medical Officer of the Cholangiocarcinoma Foundation
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Juan Valle, MB ChB, about his appointment as the Cholangiocarcinoma Foundation's first-ever chief medical officer and what it means for patients with the disease.
14 min - An Interview With Prader-Willi Syndrome Patient Advocate Paige Rivard
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Paige Rivard, past president of the Prader-Willi Syndrome Association USA, on the extreme challenges faced by parents of children with this disease.
17 min - An Interview With Italian Cholangiocarcinoma Expert Lorenza Rimassa, MD
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lorenza Rimassa, MD, associate professor of medical oncology at Italy’s Humanitas University and Humanitas Research Hospital, about current research on treatment options for cholangiocarcinoma.
16 min - An Interview With Jennifer Miller, MD, A Leading Researcher in Prader-Willi Syndrome
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jennifer Miller, MD, a professor of pediatric endocrinology at the University of Florida who specializes in treating children with Prader-Willi syndrome and other causes of excessive weight gain in childhood.
17 min
About Rare Care Podcast
From the publisher's feed
Rare Disease Advisor's Rare Care podcast features conversations with experts, healthcare providers, patients, caregivers, and advocates about treating and living with rare diseases.