#49 Living with NMOSD: Alex Brito's Journey of Resilience and Advocacy
Discover how Alex Brito turns life with NMOSD into a story of strength, advocacy, and inspiration.
#39 Genetic Testing for Rare Diseases with Amy Patterson
Genetic Counselor Amy Patterson shares about genetic screening and testing available for rare disease including her speciality of skeletal dysplasia.
#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.
#30 Rare Disease Advocacy with Wes Michael
Celebrate Rare Disease month in this episode with the President and Founder of Rare Patient Voice.
#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.
#18 Hattersley-Urano Wolfram Syndrome with Parent Tamara Blum
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.