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Rare Care Podcast
Rare Care Podcast episodes
- An Interview With Melinda Bachini, Chief Patient Officer at the Cholangiocarcinoma Foundation
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Melinda Bachini, chief patient officer at the Cholangiocarcinoma Foundation, about a new study detailing the burden on caregivers of people with cholangiocarcinoma.
19 min - An Interview With Kyle Bryant, Director of the Ambassador Program at the Friedreich's Ataxia Research Alliance
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Kyle Bryant, director of the Ambassador Program at the Friedreich's Ataxia Research Alliance (FARA), and founder and director of rideATAXIA.
10 min - An Interview With Paul Bolno, MD, CEO of Wave Life Sciences
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Paul Bolno, MD, the CEO of Wave Life Sciences, whose investigational therapy WVE-003 is a potential treatment for Huntington disease.
13 min - An Interview With Chris Peetz, CEO of Mirum Pharmaceuticals
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Chris Peetz, CEO of Mirum Pharmaceuticals, about the growing number of treatments for pruritis (severe itch), one of the worst symptoms associated with Alagille syndrome.
14 min - An Interview With Thierry VandenDriessche, PhD, of the European Society of Gene & Cell Therapy
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Belgian molecular biologist Thierry VandenDriessche, PhD, president of the local organizing committee of the European Society of Gene & Cell Therapy.
11 min - An Interview With Brian O'Mahony, CEO of the Irish Haemophilia Society
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Brian O'Mahony, president of the Irish Haemophilia Society and one of the few hemophilia B patients in Europe to receive gene therapy.
9 min - An Interview With Selene Capodarca, Global Study Coordinator for HD-Enroll
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Selene Capodarca. This Italian expert in pharmaceutical chemistry and technology, is the global study director for Enroll-HD, with 30,000 patients the world's largest observational study in Huntington disease.
12 min - An Interview With Professor Claire Booth, Cofounder of the AGORA Initiative
Larry Luxner, senior correspondent for Rare Disease Advisor, talks with Professor Claire Booth of University College London and cofounder of the AGORA Initiative, which aims to tackle the growing economic hurdles that prevent lifesaving gene therapies from reaching children who need them the most.
13 min - An Interview With Dr. Paul Bolno, CEO of Wave Life Sciences
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Paul Bolno, MD, the CEO of Wave Life Sciences, whose investigational therapy WVE-006 is a potential treatment for the liver disease associated with alpha-1 antitrypsin disorder (AATD).
11 min - An Interview With Margareth Ozelo, Director of the International Hemophilia Training Centre (IHTC) at Brazil's University of Campinas (UNICAMP)
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Brazilian bleeding disorders expert Margareth Ozelo, who has been researching gene therapies for hemophilia for the past 25 years.
7 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.