The Rare Disorder Podcast

This episode isn’t about rare disease, advocacy, or biotech—at least not directly. It’s different. It’s slower. It’s personal. I recorded this audio piece on my summer abroad in Switzerland and Italy, where I spent time hiking, wandering, and rethinking what leadership means when you’re not in control, but still choosing how to move. It’s part travel log, part inner documentary. I talk about still...

Welcome to "Innovate, Iterate, Impact" ft. Co-Founder of AdaptTrack, Samuel Taggard. This is a podcast exploring the transformative journey of entrepreneurship through the lens of academic learning and real-world insights. Join Shivani Vyas, a Duke University student studying Financial Economics and Entrepreneurship, as she reflects on key lessons from the course I&E 352: Strategies for Innova...

Show Notes: In this episode, I chat with Wes Michael, President at Rare Patient Voice. Wes Michael, President and Founder of Rare Patient Voice, has been involved in rare and orphan diseases since 1998, interviewing and surveying patients, caregivers, physicians, nurses and advocacy leaders. Wes has more than 40 years experience in marketing research, and more than 20 years in healthcare marketing...

Show Notes: In this episode, I chat with Ben LeNail, Healthcare Investor & Consultant.  Ben Lenail, based in Palo Alto CA, has consulted with biotech companies such as Minoryx Therapeutics, Autobahn Therapeutics, and Deep Genomics. Ben is an investor in 15 early-stage healthcare companies with HealthTech Capital. He is a mentor with the Chan Zuckerberg Initiative; and serves on the B...

Show Notes: In this episode, I chat with Dr. Terry Jo Bichell, Founder & Director at COMBINEDBrain.  Terry Jo Bichell worked as a documentary filmmaker in the early days of videotape, then became a public health nurse-midwife after filming a difficult birth in West Africa. When her youngest child, Lou, was diagnosed with Angelman syndrome, she switched from midwifery to clinical research...

Show Notes: In this episode, I chat with Daniel Dry Dock Shockley, a retired Navy, a veteran, and a 10 year hereditary colon cancer warrior. Daniel serves as a member of the University of Michigan Genetic Hereditary Testing (Might) Advisory Board and of the University of Texas Health Center, San Antonio, Texas, where he does live-case presentations for the Genetics in GI Malignancy multidisciplina...

The episode we've all been waiting for, and it's finally here! In this episode, I'm so honored to chat with Beth Nguyen. Beth is the Managing Director; Founding Partner, and President of Rare STRIDES. Beth is a seasoned registered nurse with a diverse background in critical care, transplant, and emergency room; Honored Atlanta AJC Nurse of the Year Nominee three years consecutively for excellence...

In this episode, I chat with Rich Horgan, the Founder and President of Cure Rare Disease.  Cure Rare Disease is developing custom therapeutics that are as unique to the individuals they are meant to treat. Their mission is to offer effective, life-saving treatments developed through collaborations with world-renowned researchers and clinicians, and in partnership with our generous donors. The...

In this episode, I chat with Saida Mahoney, a fighter of Partial Trisomy Of 8q. Saida Luvenia Mahoney is 25 years old and lives in Oakland, California. She is an author and a proud student at Modesto Junior College, San Joaquin Delta College, and Merced College. Saida is a performing arts major and creates music, does dance, and performs in theatre. She also does recording arts, songwriting, and a...

In this episode, I chat with Ella Balasa, a Patient Advocate, Speaker, and Consultant.  Ella is passionate about amplifying the patient voice in healthcare. Having a background in biology, Ella has experienced both sides of the research spectrum - as a patient and a scientist.  Examining antibiotic resistant bacteria in the environment, which is the same bacteria that thri...

In this episode, I chat with Terry Wilcox, the Founder and Executive Director of Patients Rising and Patients Rising Now.  Formed in 2015 as a 501(c)3, Patients Rising has developed a significant following of over 110,000 patients and caregivers and has guided more than 25,000 of them on their journeys to advocate for themselves and their loved ones to get the care and treatments they need to...

In this episode, I interview Jenny Jones, a fighter of Familial Adenomatous Polyposis and Short Bowel Syndrome. Jenny was diagnosed with the rare, hereditary colon cancer syndrome Familial Adenomatous Polyposis at age 8 and had her first surgery to remove her colon at age 9. After experiencing life-threatening complications, Jenny required 4 more surgeries that year and developed another rare dise...

In this episode, I chat with Parvathy Krishnan, a rare mom and the Foundation Alliance Manager at Global Genes. Global Genes provides hope for the more than 400 million people affected by rare disease around the globe. They fulfill their mission by helping patients find and build communities, gain access to information and resources, connect to researchers, clinicians, industry, government, and ot...

In this episode, I chat with Courtney Felle, a Patient Engagement Fellow at EveryLife Foundation for Rare Diseases. The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesavin...

In this episode, I chat with Maria Thacker-Goethe, the CEO of Georgia Bio.  Maria Thacker-Goethe has more than 13 years of experience in non-profit management and development. She was appointed president and CEO for Georgia Bio and the Georgia BioEd Institute in February 2019. Maria has helped build the organization into one of the top state bioscience and medtech associations through her com...

In this episode, I chat with Dr. Sarah McCool, who is a Clinical Associate Professor and Director of Undergraduate Programs at the School of Public Health at Georgia State University. In this podcast, Dr. McCool discusses various projects she has completed, causes she is passionate about, her extensive background and experience, and much more!  Dr. McCool has worked in global health...

In this episode, I chat with Dr. Monkol Lek, who is an assistant professor of genetics at Yale University, and an avid researcher with his own established lab, the Lek Lab, at Yale Medical School. He is also part of the research team at Cure Rare Disease, an organization with a mission to develop custom therapeutics that are as unique to the individuals they are meant to treat. In this podcas...

In this episode, I chat with Tara Britt, who is the Associate Chair of the North Carolina Rare Disease Advisory Council and Founder and President of the Rare Disease Innovations Institute. Rare Disease Innovations Institute is a global non-profit focused on educating, engaging and equipping the rare disease community. Through policy, tools and data they achieve a higher quality of life, accelerati...

In this episode, I chat with Annie Watson, a high school student, aspiring journalist and podcaster who has a rare sleep disorder called narcolepsy. She was diagnosed at 6 years old, and finally stepped into the rare disease community as a freshman in high school. She has been involved with Narcolepsy Network since 2018, and started her podcast, R is for Rare, in January 2021. She writes for her h...

In this episode, I chat with Anna Laurent, who is the Head of Programs and Initiatives at Our Odyssey, an organization which aims to connect young adults impacted by a rare or chronic condition with social and emotional support in the hope of improving their quality of life. Our Odyssey's vision is to establish a national organization with a platform that empowers, educates, and connects young adu...

In this episode, I chat with Ms. Hardy, a licensed, certified genetic counselor at JScreen, which is a national-nonprofit offering genetic testing and education. JScreen is a national non-profit public health initiative, based out of the Department of Human Genetics at Emory University, is now offering cancer genetic testing for BRCA and 60 other cancer susceptibility genes. These genes are associ...

In this episode, I interview Hasitha Illa, who is a fighter of Freidreich's Ataxia. Hasitha was diagnosed with a super rare disease called Friedreich's Ataxia. This is a genetic, progressive, neurodegenerative movement disorder, characterized by unsteady posture, frequent falling, and progressive difficulty of walking due to impaired ability to coordinate voluntary movements. This traumatic e...

In this episode, I chat with Erin Smith, who is the Senior Patient Engagement Manager at AllStripes. Erin is responsible for running the ambassador program at AllStripes. She discusses what AllStripes does and its mission, ways patients can get involved and advocate for themselves through the ambassador program which she runs, her personal story with rare disease advocacy, and so much more! ...

In this episode, I interview Amber, mom of Maxwell, a child with SLC6A1. Amber Freed's 2 year-old son, Maxwell, has a rare genetic neurological disease called SLC6A1. Amber is on a mission to raise $4,000,000 to advance a clinical trial that will cure every child with this disorder and give Maxwell a chance at life. To date, she has raised close to $3,000,000. SLC6A1 is the 10th cause of autism, 6...

In this podcast, I interview Laura Romano, who is a fighter of multiple rare diseases! Laura is a 23-year-old recent graduate from Simmons University where they majored in Neuroscience. They are currently working as an assistant teacher in a preschool classroom and will begin a Master’s of Education in Early Childhood Education in January. Laura lives with Classical-like Ehlers Danlos Syndrom...