The Rare Disorder Podcast

Leading Through Stillness: A Summer Abroad

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 a

Innovate, Iterate, Impact: ft. Co-Founder of AdaptTrack

Welcome to "Innovate, Iterate, Impact" ft. Co-Founder of AdaptTrack, Samuel Taggard. This is a podcast exploring the transformative journey of entrepreneurship through th

40. Meet an Expert: Wes Michael, President at Rare Patient Voice

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 ra

39. What's to Come + Meet an Expert: Ben LeNail, Healthcare Investor & Consultant

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

38. GA RDAC Update + Meet an Expert: Dr. Terry Jo Bichell, Founder & Director at COMBINEDBrain

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 day

37. Rare Disease Week + Meet a Fighter: Daniel Dry Dock Shockley, Retired Navy & 10-year Hereditary Colon Cancer Warrior

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 o

36. Welcome Back + Meet an Expert: Beth Nguyen, Founder at Rare Strides & GA NORD Ambassador

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,

35. Meet an Expert: The Rare Disorder Podcast X Cure Rare Disease ft. Rich Horgan, Founder & President

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

34. Meet a Fighter: Partial Trisomy Of 8q ft. Saida Mahoney

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

33. Meet a Partner: The Rare Disorder Podcast X Ella Balasa, Patient Advocate, Speaker, and Consultant

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 ba

32. Meet an Expert: The Rare Disorder Podcast X Patients Rising ft. Terry Wilcox, CEO

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 h

31. Meet a Fighter: Familial Adenomatous Polyposis & Short Bowel Syndrome ft. Jenny Jones

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 cance

30. Meet an Expert: The Rare Disorder Podcast X Global Genes ft. Parvathy Krishnan, Foundation Alliance Manager

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 p

29. Meet a Partner: The Rare Disorder Podcast X YARR ft. Courtney Felle, Patient Engagement Fellow

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

28. Meet an Expert: The Rare Disorder Podcast X Georgia Bio ft. Maria Thacker-Goethe, CEO

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 develo

27. Meet an Expert: The Rare Disorder Podcast X Dr. Sarah McCool

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 Stat

26. Meet an Expert: The Rare Disorder Podcast X Dr. Monkol Lek

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 La

25. Meet an Expert: The Rare Disorder Podcast X Rare Disease Innovation Institute ft. Tara Britt, CEO

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 Inno

24. Meet a Partner: The Rare Disorder Podcast X R is for Rare ft. Annie Watson, Host

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

23. Meet a Partner: The Rare Disorder Podcast X Our Odyssey ft. Anna Laurent, Head of Programs

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 ra