Rare Disease Advisor's Rare Care Podcast features exclusive interviews with experts and stakeholders from the rare disease community.
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A podcast for parents and families of people living with rare diseases in Ontario. I Care for Rare is a social advocacy campaign, designed to give individuals, families and caregivers living with rare diseases a collective voice for system healthcare AND community support reform.
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134: An Interview With Dr. Jeffrey A. Cohen of the Cleveland Clinic on Cellular Therapies for MS
10:25
10:25
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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews neurologist Jeffrey A. Cohen, MD, of Ohio's Cleveland Clinic on the latest developments in cellular therapies to treat multiple sclerosis.By Rare Care Podcast
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133: An Interview With Maureen Juip, Secretary of the Friedreich's Ataxia Research Alliance and Mother of 2 Children With FA
8:58
8:58
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133: An Interview With Jacquelyn Bainbridge, DPharm, of the University of Colorado, on Cannabis Therapy for MS
12:20
12:20
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12:20
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jacquelyn Bainbridge, DPharm, a neurology professor at the University of Colorado in Aurora, on the benefits of medical cannabis in treating multiple sclerosis.By Rare Care Podcast
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132: An Interview With Michelle C. Werner, CEO of Alltrna
14:44
14:44
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131: An Interview With Dr. Flavia Nelson of the University of Miami on Treatment Options for NMOSD
13:02
13:02
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13:02
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Flavia Nelson, MD, director of the Multiple Sclerosis Center of Excellence at the University of Miami in Florida, on the difficulties of diagnosing neuromyelitis optica spectrum disorder.By Rare Care Podcast
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130: An Interview With Kevin M. Flanigan, MD, Director of the Center for Gene Therapy at Nationwide Children's Hospital in Columbus, Ohio
10:06
10:06
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10:06
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Kevin M. Flanigan, MD, director of the Center for Gene Therapy at the Abigail Wexner Research Instute of Nationwide Children’s Hospital in Columbus, Ohio. The subject of our talk is exon skipping therapies for Duchenne muscular dystrophy.…
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129: An Interview With Durresamin Khan, Pakistani Mother of a Boy With Duchenne Muscular Dystrophy
8:31
8:31
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8:31
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Durresamin Khan, the Pakistani mother of a boy with Duchenne muscular dystrophy, about the difficulties of obtaining treatment for DMD patients who are ineligible for gene therapy.By Rare Care Podcast
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128: An Interview With Jenny Huang, Mother of SMA Patient and MIT Math Whiz Benjamin Lou
15:00
15:00
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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jenny Huang, whose son, Benjamin Lou, is an award-winning math major at MIT who also has spinal muscular atrophy.By Rare Care Podcast
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127: An Interview With Omer Abdul Hamid, MD, of Nemours Children's Hospital in Orlando, Florida
14:02
14:02
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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Omer Abdul Hamid, MD, a neurologist at Nemours Children's Hospital in Orlando, Florida, on gene therapy's potential to treat Duchenne muscular dystrophy.By Rare Care Podcast
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126: An Interview With Pamela Gavin, New CEO of the National Organization for Rare Disorders (NORD)
14:23
14:23
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14:23
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Pamela Gavin, the newly appointed CEO of the National Organization for Rare Disorders (NORD).By Rare Care Podcast
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125: An Interview With Patricia Weltin, Founder and CEO of Beyond The Diagnosis
17:59
17:59
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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Patricia Weltin,founder and CEO of Beyond the Diagnosis—a nonprofit that uses art to raise public awareness of children with ultra-rare diseases.By Rare Care Podcast
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125: An Interview With Sarah Glass, PhD, of the n-Lorem Foundation
16:36
16:36
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16:36
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sarah Glass, PhD, chief operating officer of the n-Lorem Foundation—and the mother of a boy with an ultra-rare disease.By Rare Care Podcast
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124: An Interview with Dimitrios Karussis, MD, PhD, on Stem Cell Therapy for Multiple Sclerosis
14:47
14:47
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The Unsung Heroes: Siblings Caring for Loved Ones with Rare Diseases
43:14
43:14
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I Care for Rare is a podcast for parents and families of people living with rare diseases. It’s co-hosted by Sherrilynne Starkie and Sandra Markus, the visionary behind the I Care for Rare campaign and its mission to create a collective voice for individuals, families, and caregivers living with rare diseases, inspired by her experience caring for …
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123: An Interview With Mary Morlino, Patient Navigator at the Undiagnosed Diseases Network Foundation
11:15
11:15
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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Mary Morlino, who has sarcoidosis and is the patient navigator for the Undiagnosed Diseases Network Foundation.By Rare Care Podcast
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122: An Interview WIth Tracy Sharp, a Patient With Lambert-Eaton Myasthenic Syndrome
13:46
13:46
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121: An Interview With University of Pennsylvania Neurologist and CIDP Expert Chafic Karam, MD
4:13
4:13
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Powering Through Adversity: Personal Trainer Shaun Kehoe’s Journey from Brain Surgery to Fitness Advocate
32:21
32:21
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The I Care for Rare podcast reveals the challenges faced by the families caring for people who have a rare health condition, In this episode we delve into the challenging world of rare diseases with Sandra Markus, founder of iCare4Rare, and Shaun Kehoe, a certified personal trainer with a remarkable journey of his own. Zach, Sandra’s adult son with…
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120: An Interview with Avner Reshef, MD, Top Israeli Expert in Hereditary Angioedema
17:11
17:11
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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Israeli expert Avner Reshef, MD, director of the Allergy, Immunology, and Angioedema Center at Barzilai University Medical Center in Ashkelon, only a few miles from the border with war-torn Gaza.By Rare Care Podcast
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119: An Interview With Pediatric Neurologist Edward Smith, MD, on the FDA Approval of Vamorolone for Boys With Duchenne Muscular Dystrophy
15:58
15:58
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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews pediatric neurologist Edward Smith, MD, about the recent approval of vamorolone, a synthetic corticosteroid, in boys with Duchenne muscular dystrophy.By Rare Care Podcast
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118: An Interview With Sharon Hesterlee, PhD, Chief Research Officer at the Muscular Dystrophy Association
7:58
7:58
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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sharon Hesterlee, PhD, chief research officer at the Muscular Dystrophy Association, about the recent proliferation of gene therapies and other treatments for neuromuscular diseases.By Rare Care Podcast
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117: An Interview With Ira Walker, the Muscular Dystrophy Association's 2024 National Ambassador, About Living With Spinal Muscular Atrophy
12:02
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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Ira Walker, the Muscular Dystrophy Association's 2024 National Ambassador, at the MDA's 2024 Clinical & Scientific Conference in Orlando, Florida. Walker, 39, has spinal muscular atrophy (SMA) type 2.By Rare Care Podcast
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116: An Interview With Seema Lalani, MD, Director of Project GIVE, a Pediatric Rare Disease Screening Program in the Rio Grande Valley of Texas
11:34
11:34
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11:34
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Seema Lalani, MD, of Baylor College of Medicine in Houston, Texas. Dr. Lalani directs Project GIVE (Genetic Inclusion by Virtual Evaluation), a pediatric screening program in the impoverished 4-county Rio Grande Valley region of southern Texas.…
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115: An Interview With Matt Trudeau of ITF Therapeutics, on Givinostat as a Therapy for Duchenne Muscular Dystrophy
9:52
9:52
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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Matt Trudeau, head of ITF Therapeutics—a division of Italy's Italfarmaco—on treating Duchenne muscular dystrophy with givinostat, a histone deacetylase inhibitor.By Rare Care Podcast
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114: An Interview With Thomas Holm Pedersen, PhD, Cofounder and CEO of Denmark's NMD Pharma
14:34
14:34
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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Thomas Holm Pedersen, PhD, cofounder and chief executive of NMD Pharma, a Danish company that's pursuing the use of chloride channel 1 (ClC-1) as a novel target for restoring muscle function in both myasthenia gravis and spinal muscular atrophy.…
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113: An Interview With Courtney Silverthorn, MD, Associate VP of Science Partnerships at the Foundation for the National Institutes of Health
12:19
12:19
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12:19
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Courtney Silverthorn, MD, of the Foundation for the National Institutes of Health (NIH) about the NIH's Bespoke Gene Therapy Consortium.By Rare Care Podcast
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112: An Interview With Cristol Barrett O'Loughlin, CEO of Raregivers
12:52
12:52
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12:52
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Cristol Barrett O'Loughlin, founder and CEO of Raregivers—a nonprofit organization that offers mental health and wellness services to those caring for people with rare diseases.By Rare Care Podcast
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111: An Interview With Omar Kamlin, MD, Senior Medical Director at Orphalan
15:08
15:08
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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Omar Kamlin, MD, senior medical director at French drugmaker Orphalan, whose therapy, Cuvrior, treats Wilson disease.By Rare Care Podcast
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110: An Interview With Melinda Bachini, Chief Patient Officer at the Cholangiocarcinoma Foundation
18:20
18:20
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18:20
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.By Rare Care Podcast
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The Social Isolation of Caring For Someone with a Rare Disorder
36:57
36:57
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I Care for Rare reveals the challenges faced by the families caring for people who have a rare health condition. In this episode of the I Care for Rare podcast host Sherrilynne Starkie and Sandra Markus, founder of I Care for Rare, welcome Carl Weatherall to the show. As father to Alyssa, a young woman who experiences hundreds of epileptic seizures…
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109: An Interview With Kyle Bryant, Director of the Ambassador Program at the Friedreich's Ataxia Research Alliance
9:03
9:03
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9:03
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.By Rare Care Podcast
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109: An Interview With Paul Bolno, MD, CEO of Wave Life Sciences
12:32
12:32
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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.By Rare Care Podcast
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An Interview With Chris Peetz, CEO of Mirum Pharmaceuticals
13:55
13:55
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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.By Rare Care Podcast
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107: An Interview With Thierry VandenDriessche, PhD, of the European Society of Gene & Cell Therapy
10:09
10:09
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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.By Rare Care Podcast
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106: An Interview With Brian O'Mahony, CEO of the Irish Haemophilia Society
8:38
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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.By Rare Care Podcast
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Jen Schultz: Caring for her one-of-a-kind daughter
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In this episode of the I Care for Rare podcast hosts Sandra Markus and Sherrilynne Starkie interview Jen Schultz, a parent who is in the front lines of caring for a one-of-a-kind young woman. Her daughter Olivia is the only person in the world to be diagnosed with her rare disease. She has very complex needs and she and Jenn, as her carer, face man…
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105: An Interview With Selene Capodarca, Global Study Coordinator for HD-Enroll
11:00
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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.By Rare Care Podcast
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104: An Interview With Professor Claire Booth, Cofounder of the AGORA Initiative
12:20
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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.By Rare Care Podcast
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103: An Interview With Dr. Paul Bolno, CEO of Wave Life Sciences
10:28
10:28
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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).By Rare Care Podcast
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Tammie Moretton: Raising a Child with Complex Needs
49:02
49:02
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In this episode of the I Care for Rare podcast hosts Sandra Markus and Sherrilynne Starkie interview Tammie Moretton, a parent who has journeyed the intricate road of caring for and raising a child with complex needs, and who sheds light on the challenges faced by such families in Canada. I Care for Rare is more than just a podcast; it's a social a…
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102: An Interview With Margareth Ozelo, Director of the International Hemophilia Training Centre (IHTC) at Brazil's University of Campinas (UNICAMP)
6:55
6:55
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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.By Rare Care Podcast
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101: An Interview With Rob Haselberg, an Huntington Patient Advocate Who Has Tested Positive for the Disease
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6:55
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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.By Rare Care Podcast
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100: An Interview With Herwig Lange, MD, President of the German Huntington Association
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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.By Rare Care Podcast
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A Family’s Fight for Health Care and Social Support
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Step into the world of rare diseases and learn about the challenges faced by families across Canada. In this inaugural episode of the I Care for Rare podcast host Sherrilynne Starkie welcomes Sandra Markus, the visionary behind the I Care for Rare campaign, to share her personal journey and the mission to create a collective voice for individuals, …
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99: An Interview With Cathleen Lutz, PhD, Vice President of the Jackson Laboratory's Rare Disease Transactional Center
14:20
14:20
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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 tran…
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98: An Interview With Heather Stefanski, MD, PhD, Vice President of Medical Services at the National Marrow Donor Program's Be The Match
12:59
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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 …
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97: An Interview With Astri Arnesen, President and CEO of the European Huntington Association
16:59
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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.By Rare Care Podcast
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96: An Interview With Derek de Winter, MD, Coordinating Investigator of the DIONYSUS Study
11:05
11:05
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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).By Rare Care Podcast
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95: An Interview With Juan Valle, MB ChB, Chief Medical Officer of the Cholangiocarcinoma Foundation
13:58
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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.By Rare Care Podcast
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94: An Interview With Prader-Willi Syndrome Patient Advocate Paige Rivard
16:44
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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.By Rare Care Podcast
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