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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147: An Interview With Jean Elwing, MD, a Pulmonary Hypertension Expert at the University of Cincinnati
13:46
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.توسط Rare Care Podcast
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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.توسط Rare Care Podcast
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145: An Interview With Sandy Siegel, Founder and President of the Siegel Rare Neuroimmune Association
16:10
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sandy Siegel, founder and president of the Siegel Rare Neuroimmune Association. Siegel started the charity 30 years ago with his wife, Pauline, after she was diagnosed with transverse myelitis. After Pauline's death in 2017, the organization expanded to include five other rare …
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144: An Interview With Anastasia Vishnevetsky, MD, MPH, on the Use of Cannabis to Treat NMOSD
16:32
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Anastasia Vishnevetsky, MD, MPH, of Massachusetts General Hospital and Harvard Medical School. Dr. Vishnevetsky is heading a groundbreaking clinical trial of the cannabinoid spray nabiximols in treating the symptoms of NMOSD.توسط Rare Care Podcast
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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Ignacio Muñoz-Sanjuan, PhD, the president and founder of Factor-H—a Los Angeles-based nonprofit organization that works to alleviate extreme poverty among people with Huntington disease in Venezuela, Colombia, and Peru.توسط Rare Care Podcast
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142: An Interview With Amy Case, MD, Chief Medical Officer of the Pulmonary Fibrosis Foundation
16:30
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Amy Case, MD, chief medical officer of the Pulmonary Fibrosis Foundation, about the importance of passing the bipartisan Supplemental Oxygen Access Reform (SOAR) Act, which is currently stalled in Congress.توسط Rare Care Podcast
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141: An Interview WIth Steve Van Wormer, Cofounder and Director of the Phaware Global Association
12:02
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Steve Van Wormer, cofounder and director of the Phaware Global Association. Van Wormer became a patient advocate after his late son, Lucas, was diagnosed with pulmonary hypertension at age 4.توسط Rare Care Podcast
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140: An Interview With Victor Test, MD, Chair of the Pulmonary Vascular Disease Program at Texas Tech School of Medicine in Lubbock
12:49
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Victor Test, MD, an expert in pulmonary arterial hypertension (PAH). Dr. Test is a professor of medicine and chair of the pulmonary vascular disease program at Texas Tech School of Medicine in Lubbock.توسط Rare Care Podcast
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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews pulmonologist Drew Harris, MD, an associate professor of medicine at the University of Virginia in Charlottesville. Dr. Harris is also medical director of the Black Lung Program at Stone Mountain Health Services, in the heart of southwestern Virginia's coal-mining industry.…
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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Mahesh Desai, PhD, of the Luxembourg Institute of Health’s Department of Infection and Immunity. Dr. Desai discusses how healthy gut bacteria may reduce the side effects of chemotherapy in cancer patients.توسط Rare Care Podcast
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137: An Interview With Karin Hoelzer, DVM, PhD, Senior Director of Policy and Regulatory Affairs at NORD
9:44
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Karin Hoelzer, DVM, PhD, senior director of policy and regulatory affairs at the National Organization for Rare Disorders (NORD). Dr. Hoelzer discusses the importance of convincing the US Congress to renew the Rare Pediatric Disease Priority Review Voucher Program, which is set…
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136: An Interview With Susan Ward, PhD, Founder and Executive Director of the Collaborative Trajectory Analysis Project (cTAP)
15:32
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Susan Ward, PhD, founder and executive director of the Collaborative Trajectory Analysis Project (cTAP), which seeks to broaden patient eligibility for clinical trials in Duchenne muscular dystrophy.توسط Rare Care Podcast
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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Taylor Kane, founder and executive director of 'Remember the Girls.' The charity advocates for female carriers of X-linked rare disorders including Duchenne muscular dystrophy and hemophilia.توسط Rare Care Podcast
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134: An Interview With Dr. Jeffrey A. Cohen of the Cleveland Clinic on Cellular Therapies for MS
10:25
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.توسط 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
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133: An Interview With Jacquelyn Bainbridge, DPharm, of the University of Colorado, on Cannabis Therapy for MS
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.توسط Rare Care Podcast
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توسط Rare Care Podcast
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131: An Interview With Dr. Flavia Nelson of the University of Miami on Treatment Options for NMOSD
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.توسط 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
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
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.توسط Rare Care Podcast
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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.توسط 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
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.توسط 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
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Pamela Gavin, the newly appointed CEO of the National Organization for Rare Disorders (NORD).توسط Rare Care Podcast
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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.توسط Rare Care Podcast
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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.توسط Rare Care Podcast
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124: An Interview with Dimitrios Karussis, MD, PhD, on Stem Cell Therapy for Multiple Sclerosis
14:47
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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
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.توسط Rare Care Podcast
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توسط Rare Care Podcast
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121: An Interview With University of Pennsylvania Neurologist and CIDP Expert Chafic Karam, MD
4:13
توسط Rare Care Podcast
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Powering Through Adversity: Personal Trainer Shaun Kehoe’s Journey from Brain Surgery to Fitness Advocate
32:21
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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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.توسط 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
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.توسط Rare Care Podcast
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118: An Interview With Sharon Hesterlee, PhD, Chief Research Officer at the Muscular Dystrophy Association
7:58
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.توسط 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
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.توسط 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
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
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.توسط Rare Care Podcast
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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
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.توسط Rare Care Podcast
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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.توسط Rare Care Podcast
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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.توسط Rare Care Podcast
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110: An Interview With Melinda Bachini, Chief Patient Officer at the Cholangiocarcinoma Foundation
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.توسط Rare Care Podcast
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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
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.توسط Rare Care Podcast
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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.توسط Rare Care Podcast
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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.توسط Rare Care Podcast
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107: An Interview With Thierry VandenDriessche, PhD, of the European Society of Gene & Cell Therapy
10:09
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.توسط Rare Care Podcast
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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.توسط Rare Care Podcast
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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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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.توسط Rare Care Podcast
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