Dr. Susan Liebman’s powerful new book, The Dressmaker's Mirror, reflects on her family’s tragedies and how genetic insights can prevent cardiac sudden death and save lives.
All in Patient Advocate
#309 Netflix’s Sandra Lee on her Breast Cancer and “Blue Ribbon Baking Championship”
Multiple Emmy Award-Winning Sandra Lee shares her personal breast cancer experience and new Netflix baking championship show.
#305 Transformative Therapies for Sickle Cell Disease with “Through The Genes”
Co-hosts Wunmi Bakare and Dima Hendricks, of “Through The Genes” podcast, share their decision making whether to pursue transformative therapy for their sickle cell disease.
#254 Bardet Biedl Syndrome with The Alms
Episode drop of It Happened To Me with parents of a child with Bardet Biedl Syndrome, a rare disease affecting vision, obesity, extra fingers/toes and other symptoms.
#253 Inborn Errors of Immunity with Felicia Morton and Torry Howell
Rare disease advocate, Felicia Morton, and genetic counselor, Torry Howell, join us to talk about inborn errors of immunity including chronic granulomatous disease.
#252 Pierre Robin Syndrome with Corinne Merlino
DNA Today’s Communication Lead, Corinne Merlino, shares about her rare congenital birth defect that affects craniofacial development and how it influenced her to become a genetic counselor.
#248 Ornithine Transcarbamylase (OTC) Deficiency
Researchers, Dr. Aimée Dudley and Dr. Andrea Gropman, and patient advocate, Tresa Warner, discuss the most common urea cycle disorder.
#240 Young Adult Patient Advocacy with Sneha Dave
Sneha Dave, Founder and Executive Director of Generation Patient, discusses her experience as a young adult patient advocate for ulcerative colitis.
#238 Secondary Findings with Caralynn Wilczewski and Andrea Alvarez
Genetic testing secondary findings and a study exploring what they mean for the patients who receive them. Learn more in this 30 minute podcast episode with a patient advocate and an expert from the NIH.
#236 Assessing for Alzheimer’s Disease with Quest Diagnostics
Genetic Counselor Susan Hanh shares new risk assessment advances like Quests tests and Patient Advocate Rebecca Chopp shares about her diagnosis and experience.
#205 Multiple Sulfatase Deficiency with the United MSD Foundation
Amber Olsen and Faith McGown of the United MSD Foundation discuss Multiple Sulfatase Deficiency.
#203 CTNNB1 Syndrome with Effie Parks of Once Upon a Gene
Podcast host and rare disease advocate, Effie Parks, chats about her son Ford who has CTNNB1 Syndrome.
#196 Mitochondrial Disorders with Devin Shuman and Lissa Poincenot
Mitochondrial experts Devin Shuman and Lissa Poincenot discuss Leber Hereditary Optic Neuropathy.
#192 Osteogenesis Imperfecta with The Middle’s Atticus Shaffer
Atticus Shaffer of The Middle on ABC discusses life with osteogenesis imperfecta and his acting career.
#190 PhenoTips: Gender Affirming Care in Genetic Counseling
Perspectives from a trans patient advocate and prenatal/cancer genetic counselors about pedigrees, terminology, and overall gender affirming care.
#188 Propionic and Methylmalonic Acidemia with HemoShear Therapeutics
Patient advocate, Bryan Kelly, & HemoShear CMO, Dr. Pat Horn, discuss life with Proprionic and Methylmalonic Acidemia and an investigational therapy.
#186 n-Lorem: Nano-Rare Diseases with Luke Rosen and Wendy Chung
First episode of the N-Lorem Foundations’ “Patient Empowerment Program” features an actor turned patient advocate and a pediatric geneticist.
#176 Glee's Lauren Potter on Down Syndrome Awareness
Lauren Potter (aka Becky Jackson from Fox’s hit TV show Glee) discusses Down Syndrome awareness and advocacy.
#173 GRIN1 with Keith McArthur
Keith McArthur shares about his son Bryson’s GRIN1 rare disease diagnosis and his family's experience connecting with others in the community.
#166 Beta Thalassemia with Radhika Sawh
A genetic counselor discusses the genetics of beta thalassemia and shares her personal experience with the genetic condition.