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.

Social worker Tamara Blum shares her personal experience being a single mom of 6 children, 5 surviving children include a son with Hattersley-Urano subtype of Wolfram Syndrome.

Social worker and grieving parent Tamara Blum shares her professional insight on when to seek a mental health provider.

Brooke Eby aka @LimpBroozkit opens up about her ALS diagnosis and educating the public about ALS including her Today Show appearance.

Patient advocate Dr. Naomi Bishop and argenx’s Associate Director of Global Patient Advocacy Shelley Gerson share their insight about a skin condition called Bullous Pemphigoid.

We have two incredible guests this episode who share their expertise about an autoimmune condition multifocal motor neuropathy: patient advocate Jennifer Burgand and argenx’s Chief Scientific Officer Dr. Peter Ulrichts.

In this podcast episode, we provide a toolkit for medical challenges throughout life. We focus on helping listeners become empowered consumers. Consumers who, when faced with a serious diagnosis or medical challenge, learn to ask the right questions and consider treatment options.