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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161: An Interview With Retired NFL Athlete and Amyloidosis Patient Advocate Art Still
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17:03Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Art Still, former defensive end for the Kansas City Chiefs and an NFL Hall of Famer who's now a patient advocate dedicated to raising awareness about amyloidosis.저자 Rare Care Podcast
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In this special episode of I Care for Rare, host Sherrilynne Starkie and Sandra Markus, founder of I Care for Rare, welcome Wes Michael to the show in honour of International Rare Disease Day. Wes is the founder of Rare Patient Voice, an organization dedicated to ensuring that rare disease patients and their families have the opportunity to share t…
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160: An Interview With Heather Landau, MD, on the Latest Therapies for Amyloidosis
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17:03Larry Luxner, senior correspondent for Rare Disease Advisor, interviews oncologist-hematologist Heather Landau, MD, of Sloan Kettering Memorial Cancer Center in New York City, for National Amyloidosis Awareness Month.저자 Rare Care Podcast
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158: An Interview With Hereditary Angioedema Expert Dr. Timothy Craig
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14:19Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Timothy Craig, DO, a tenured professor of medicine, pediatrics and biomedical sciences at Pennsylvania State University in Hershey. Dr. Craig has been researching hereditary angioedema for 30 years.저자 Rare Care Podcast
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158: An Interview With Dr. Sangeetha Venugopal on the relationship between smoking and myelodysplastic syndromes (MDS)
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12:08Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sangeetha Venugopal, MD, assistant professor of clinical medicine at the University of Miami's Sylvester Comprehensive Cancer Center. Dr. Venugopal speaks on how smoking worsens outcomes for patients with a group of blood cancers known as myelodysplastic syndromes (MDS).…
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157: An Interview With Andrea Renzi, a Patient Advocate for Women Affected by HDFN
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12:15Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Andrea Renzi, a New Hampshire mother and patient advocate whose family has been affected by hemolytic disease of the fetus and newborn (HDFN).저자 Rare Care Podcast
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156: An Interview With Dr. James Bussel on Fetal and Neonatal Alloimmune Thrombocytopenia (FNAIT)
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13:27Larry Luxner, senior correspondent for Rare Disease Advisor, interviews James Bussel, MD, emeritus professor of pediatrics, medicine, and obstetrics and gynecology at New York's Weill Cornell Medicine. The topic of their discussion is nipocalimab as a potential treatment for fetal and neonatal alloimmune thrombocytopenia (FNAIT).…
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155: An Interview With Rigoberto Garcia, Executive Director of the Hemophilia Foundation of Southern California
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15:24Larry 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.저자 Rare Care Podcast
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154: An Interview With AATD Patient Kristin Hatcher of the Global Liver Institute
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13:16Larry 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.저자 Rare Care Podcast
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153: An Interview With Terry Jo Bichell, PhD, Founder and Director of CombinedBrain
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15:31Larry 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…
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152: An Interview With Erin Collins, Founder of the Chasing Rainbows Foundation
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15:23Larry 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.저자 Rare Care Podcast
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151: An Interview With NMOSD Expert Dean Wingerchuk, MD, of the Mayo Clinic
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10:27Larry 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.저자 Rare Care Podcast
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150: An Interview With Beloved Huntington Disease Activist Jimmy Pollard
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12:17Larry 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.저자 Rare Care Podcast
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149: An Interview With Clinical Psychologist Rosalind Kalb, PhD, of Can Do-MS
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13:55Larry 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.저자 Rare Care Podcast
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148: An Interview With Huntington Disease Patient Activist Tanita Allen
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11:16Larry 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.저자 Rare Care Podcast
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147: An Interview With Jean Elwing, MD, a Pulmonary Hypertension Expert at the University of Cincinnati
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13:46Larry 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.저자 Rare Care Podcast
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146: An Interview With Payel Gupta, MD, on the Importance of Social Media in Healthcare
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9:07Larry 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.저자 Rare Care Podcast
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145: An Interview With Sandy Siegel, Founder and President of the Siegel Rare Neuroimmune Association
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16:10Larry 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
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16:32Larry 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.저자 Rare Care Podcast
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143: An Interview With Ignacio Muñoz-Sanjuan, PhD, President and Founder of Factor-H
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16:07Larry 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.저자 Rare Care Podcast
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142: An Interview With Amy Case, MD, Chief Medical Officer of the Pulmonary Fibrosis Foundation
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16:30Larry 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.저자 Rare Care Podcast
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141: An Interview WIth Steve Van Wormer, Cofounder and Director of the Phaware Global Association
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12:02Larry 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.저자 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
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12:49Larry 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.저자 Rare Care Podcast
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139: An Interview With Drew Harris, MD, Expert on Black Lung Disease
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12:55Larry 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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138: An Interview With Mahesh Desai, PhD, of the Luxembourg Institute of Health
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9:47Larry 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.저자 Rare Care Podcast
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137: An Interview With Karin Hoelzer, DVM, PhD, Senior Director of Policy and Regulatory Affairs at NORD
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9:44Larry 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)
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15:32Larry 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.저자 Rare Care Podcast
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135: An Interview With Taylor Kane, Founder and Executive Director of 'Remember the Girls'
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11:15Larry 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.저자 Rare Care Podcast
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134: An Interview With Dr. Jeffrey A. Cohen of the Cleveland Clinic on Cellular Therapies for MS
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10:25Larry 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.저자 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
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8:58저자 Rare Care Podcast
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133: An Interview With Jacquelyn Bainbridge, DPharm, of the University of Colorado, on Cannabis Therapy for MS
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12:20Larry 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.저자 Rare Care Podcast
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132: An Interview With Michelle C. Werner, CEO of Alltrna
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14:44저자 Rare Care Podcast
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131: An Interview With Dr. Flavia Nelson of the University of Miami on Treatment Options for NMOSD
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13:02Larry 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.저자 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
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10:06Larry 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
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8:31Larry 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.저자 Rare Care Podcast
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128: An Interview With Jenny Huang, Mother of SMA Patient and MIT Math Whiz Benjamin Lou
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15:00Larry 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.저자 Rare Care Podcast
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127: An Interview With Omer Abdul Hamid, MD, of Nemours Children's Hospital in Orlando, Florida
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14:02Larry 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.저자 Rare Care Podcast
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126: An Interview With Pamela Gavin, New CEO of the National Organization for Rare Disorders (NORD)
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14:23Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Pamela Gavin, the newly appointed CEO of the National Organization for Rare Disorders (NORD).저자 Rare Care Podcast
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125: An Interview With Patricia Weltin, Founder and CEO of Beyond The Diagnosis
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17:59Larry 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.저자 Rare Care Podcast
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125: An Interview With Sarah Glass, PhD, of the n-Lorem Foundation
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16:36Larry 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.저자 Rare Care Podcast
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124: An Interview with Dimitrios Karussis, MD, PhD, on Stem Cell Therapy for Multiple Sclerosis
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14:47저자 Rare Care Podcast
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The Unsung Heroes: Siblings Caring for Loved Ones with Rare Diseases
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43:14I 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
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11:15Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Mary Morlino, who has sarcoidosis and is the patient navigator for the Undiagnosed Diseases Network Foundation.저자 Rare Care Podcast
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122: An Interview WIth Tracy Sharp, a Patient With Lambert-Eaton Myasthenic Syndrome
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13:46저자 Rare Care Podcast
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121: An Interview With University of Pennsylvania Neurologist and CIDP Expert Chafic Karam, MD
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4:13저자 Rare Care Podcast
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Powering Through Adversity: Personal Trainer Shaun Kehoe’s Journey from Brain Surgery to Fitness Advocate
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32:21The 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
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17:11Larry 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.저자 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
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15:58Larry 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.저자 Rare Care Podcast
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118: An Interview With Sharon Hesterlee, PhD, Chief Research Officer at the Muscular Dystrophy Association
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7:58Larry 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.저자 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
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12:02Larry 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.저자 Rare Care Podcast
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