#38 Dr. Tara Zier on Stiff Person Syndrome
The Founder of the Stiff Person Syndrome Research Foundation shares her personal journey with the rare and debilitating autoimmune disorder.
#37 Congenital Hyperinsulinism with Advocate Julie Raskin
The co-founder of Congenital Hyperinsulinism International (CHI) shares her son’s diagnosis and teaches us about the condition.
#36 Cochlear Implant Surgery and Recovery with Marc Bassin
After he recovers from his cochlear implant surgery, Marc rejoins the show to share how the experience has been.
#35 Sudden Hearing Loss with Marc Bassin
Marc experienced a sudden and unexpected loss of hearing in one ear, dramatically altering his daily life and what led to the choice to schedule his cochlear implant surgery.
#34 Bloom Syndrome with The Yasbins
Parent and Rare Disease Advocates share their son’s diagnosis odyssey with Bloom Syndrome.
#33 Tay-Sachs and Grief with Myra Sack
A mother opens up about the death of her daughter from Tay-Sachs disease and how it lead to writing her memoir, Fifty-Seven Fridays.
#32 Tay-Sachs and Carrier Screening with Dr. Matthew Goldstein
A physician-scientist father shares his heartbreaking story of the death of his daughter who was diagnosed with Tay-Sachs disease and how it motivated him to become the CEO of JScreen to prevent this experience in other families.
#31 Blood Transfusion Therapy with Lori Harada & Carly Newton
Experts from Terumo Blood and Cell Technologies share information about the patient experience of blood transfusions.
#30 Rare Disease Advocacy with Wes Michael
Celebrate Rare Disease month in this episode with the President and Founder of Rare Patient Voice.
#29 Exploring the Potential of Artificial Corneas with Dr. Esen Akpek
Dr. Apkek, internationally renowned leader in the fields of corneal transplantation and surface reconstruction, shares her expertise in these areas.
#28 Dry Eye with Dr. Esen Akpek
Internationally renowned leader in the fields of corneal transplantation and surface reconstruction, Dr. Apkek, shares her insight on dry eye.
#27 Prevention of Blindness Society
Caren Forsten and Sean Curry share low vision and blindness resources.
#26 Wolfram Syndrome Expertise from Dr. Fumihiko Urano
Dr. Fumihiko Urano shares his world renowned expertise from leading the clinical, translational, and interventional studies of Wolfram syndrome and related disorders.
#25 Pancreatic Cancer with Patient Advocate Leslie Waldman
Leslie Waldman shares her personal diagnosis of pancreatic cancer, which she has lived with for 10 years.
#24 Neuro-Ophthalmic Disorders with Dr. Andrew Carey
Insight from an Assistant Professor of Ophthalmology in the division of Neuro-Ophthalmology at the Wilmer Eye Institute.
#23 Autoimmune Conditions with Dr. Colby Kash
Author of “The Autoimmune Plague” shares about his own autoimmune conditions.
#22 Papillary Thyroid Cancer with Carly Flumer
Carly Flumer shares her experience of a diagnosis of stage I papillary thyroid cancer at the age of 27 and again at 31.
#21 Wolfram Syndrome with Parent Pat Gibilisco
Pat Gibilisco is Patient Advocacy Liaison for the Snow Foundation for Wolfram Syndrome research. In 2021, her daughter Lauren died from Wolfram Syndrome in her mid-30s.
#20 Familial Dysautonomia Foundation
We learn about the genetic conditions Familial Dysautonomia with three lovely guests: Lanie Etkind, Rita Taryan, and Keshi Taryan-Kigel.
#19 Pierre Robin Syndrome with Corinne Merlino
Patient advocate and genetic counseling student Corinne Merlino shares about her rare congenital birth defect that affects craniofacial development.