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Rare Care Podcast
Rare Care Podcast episodes
- 29: Patient Advocate Laura McLinn Discusses Her Son's Journey With DMD
Larry Luxner, senior correspondent for Rare Disease Advisor, talks with Laura McLinn, the Indiana mom of 12-year-old Jordan McLinn, who has Duchenne muscular dystrophy. Jordan, who became the unofficial poster boy of the "Right to Try" movement, has just completed 5 years in a clinical trial for a novel exon 53 skipping therapy.
11 min - 28: Dr. Anthony Feinstein on His New Book About the Neurobehavioral Consequences of MS
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Anthony Feinstein, PhD, a professor of psychiatry at the University of Toronto and a world-renowned neuropsychiatrist. We talk to the South African-born Dr. Feinstein about his new book, "Mind, Mood and Memory: The Neurobehavioral Consequences of Multiple Sclerosis."
13 min - 13 min
- Meredith O'Connor on Her Work Raising Awareness of Myasthenia GravisLarry Luxner, senior correspondent for Rare Disease Advisor, talks with Meredith O’Connor, a patient advocate and founder of a chronic illness consultancy, about her efforts to raise awareness of myasthenia gravis.8 min
- 8 min
- 25: Dr. Henry Lin on the Difficulty of Diagnosing LAL-D in Children
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Henry Lin, MD, a pediatric hepatologist with Oregon Science & Health University in Portland. Dr. Lin speaks about the difficulty of diagnosing lysosomal acid lipase deficiency (LAL-D) in children.
8 min - 24: An Interview With Dr. Albert Faro, vice president for clinical affairs at the Cystic Fibrosis Foundation14 min
- 23: An Interview With Christine Há, award-winning chef and NMOSD patient
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Christine Há — a blind chef who not only won Season 3 of the reality TV show "MasterChef" in 2012 but went on to write a bestselling cookbook and later opened two restaurants in Houston, Texas. Há, who has neuromyelitis optica spectrum disorder, is the public face of the new campaign "NMOSD Won't Stop Me."
12 min - 22: Dr. Reham Abdel-Wahab Discusses Cholangiocarcinoma Therapies and Possible Future Advances
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Reham Abdel-Wahab, MD, PhD, chief scientific officer of the Cholangiocarcinoma Foundation. Dr. Abdel-Wahab discusses recently approved therapies for this rare, aggressive bile duct cancer as well as new advances that may offer hope to patients with the disease.
13 min - 21: An Interview With Lisa Phelps Sarfaty of the National Organization for Rare Disorders Ahead of Rare Disease Day
Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Lisa Phelps Sarfaty ahead of February 28, Rare Disease Day. Sarfaty is vice president of community engagement at the National Organization for Rare Disorders (NORD), a coalition of 330 patient advocacy groups and the leading voice for an estimated 25 million Americans with rare and debilitating illnesses.
10 min
About Rare Care Podcast
From the publisher's feed
Rare Disease Advisor's Rare Care Podcast features exclusive interviews with experts and stakeholders from the rare disease community.