The Founder of the Stiff Person Syndrome Research Foundation shares her personal journey with the rare and debilitating autoimmune disorder.

The co-founder of Congenital Hyperinsulinism International (CHI) shares her son’s diagnosis and teaches us about the condition.

After he recovers from his cochlear implant surgery, Marc rejoins the show to share how the experience has been.

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.

Parent and Rare Disease Advocates share their son’s diagnosis odyssey with Bloom Syndrome.

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.

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.

Experts from Terumo Blood and Cell Technologies share information about the patient experience of blood transfusions.

Celebrate Rare Disease month in this episode with the President and Founder of Rare Patient Voice.

Dr. Apkek, internationally renowned leader in the fields of corneal transplantation and surface reconstruction, shares her expertise in these areas.

Internationally renowned leader in the fields of corneal transplantation and surface reconstruction, Dr. Apkek, shares her insight on dry eye.

Caren Forsten and Sean Curry share low vision and blindness resources.

Dr. Fumihiko Urano shares his world renowned expertise from leading the clinical, translational, and interventional studies of Wolfram syndrome and related disorders.

Leslie Waldman shares her personal diagnosis of pancreatic cancer, which she has lived with for 10 years.

Insight from an Assistant Professor of Ophthalmology in the division of Neuro-Ophthalmology at the Wilmer Eye Institute.

Author of “The Autoimmune Plague” shares about his own autoimmune conditions.

Carly Flumer shares her experience of a diagnosis of stage I papillary thyroid cancer at the age of 27 and again at 31.

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.

We learn about the genetic conditions Familial Dysautonomia with three lovely guests: Lanie Etkind, Rita Taryan, and Keshi Taryan-Kigel.

Patient advocate and genetic counseling student Corinne Merlino shares about her rare congenital birth defect that affects craniofacial development.