Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Theresa Strong, PhD, of the Foundation for Prader-Willi Research—which is the recipient of NORD's 2026 Abbey S. Meyers Leadership Award. Hosted by Simplecast, an AdsWizz company. See https://pcm.adswizz.com for information about our collection and use of personal data for advertising.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Rebecca Aune, director of education programs at the National Organization for Rare Disorders (NORD), about Rare Research Launchpad. The new program. The free, self-paced online series–designed to introduce students and early-career scientists to research and career opportunities–uses cystic fibrosis and Krabbe disease as real-...

Larry Luxner, senior correspoondent for Rare Disease Advisor, interviews Aarush Shah, a high-school senior who, along with classmate Veer Chandwani, recently established OAI Nexus, the first public AI platform built exclusively for rare diseases.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Doug Flora, MD, about his new book, "Rebooting Cancer Care: Can AI Make Care More Human Again?"

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Donna Appell, founder and executive director of the Hermansky-Pudlak Syndrome Network. Patients with the most common type of this rare disease always develop pulmonary fibrosis.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Rich Savino, a New Jersey grandfather of a boy with Duchenne muscular dystrophy. Savino, 71, is among a growing number of grandparents becoming advocates for patients affected by DMD.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Kimberly Ku, MD, an oncologist with Illinois Cancer Center and host of the podcast "Val-You Based Care,"

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Christine Clemson, PhD, senior vice-president and global head of medical affairs at Entrada Therapeutics, about exon skipping therapies in Duchenne.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Avril Daly, president of Paris-based Eurordis-Rare Diseases Europe, on how the EU is falling behind in clinical trials for rare diseases.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jim Palma, CEO of the TargetCancer Foundation, a nonprofit organization that focuses on finding treatments for rare cancers.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Duchenne expert Paul Esteso, MD, PhD, medical director of the cardiac antithrombosis management program at Boston Children's Hospital.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Teresa Barnes, founder of PF Warriors—a global support network that provides education, inspiration and hope to individuals and families affected by pulmonary fibrosis.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Martina Cornel, MD, PhD, about the importance of adopting standardized newborn screening for rare diseases throughout Europe.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Diane Zapursky Quale, who founded the Bladder Cancer Advocacy Network 20 years ago with her late husband after he developed bladder cancer.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Laurah Turner, PhD, associate dean for artificial intelligence and educational informatics at the University of Cincinnati College of Medicine.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews John MacMahon, a New Hampshire-based medical devices company that specializes in phototherapy to treat fatigue in people with multiple sclerosis.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Eric Small, MD, who recently stepped down as president of the American Society of Clinical Oncology (ASCO).

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jessie Dubief, social research director of Eurordis, about the organization's new survey on the importance of addressing mental health among both patients and caregivers affected by rare diseases.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Naomi Aziz, patient advocacy and engagement lead at the Endometrial Cancer Research Foundation. June is Uterine Cancer Awareness Month, and endometrial cancer now ranks as the nation's most common gynecologic cancer.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Michelle Ng Gong, MD, president of the American Thoracic Society (ATS). Dr. Gong formally replaced Raed Dweik, MD, at the ATS 2026 conference in Orlando, Florida.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Andrew Wilson, MD, scientific director of the Alpha-1 Foundation, about the latest therapies to treat alpha-1 antitrypsin deficiency, an incurable genetic disease that causes both lung and liver damage.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Vallerie McLoughlin, MD, director of the Pulmonary Hypertension Program at the University of Michigan-Ann Arbor, about results of a phase 3 trial for ralinepag to treat pulmonary arterial hypertension.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Craig Martin, founder and CEO of the Orphan Therapeutics Accelerator (OTXL) — a nonprofit biotech dedicated to advancing shelved clinical-stage therapies for ultrarare diseases.

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Henriette Farkas, MD, PhD, director of the Hungarian Angioedema Reference Center in Budapest, and a world expert on the treatment of HAE.