At 16 years old, Leanna Scaglione was diagnosed with NF2-Related Schwannomatosis, having to leave her dreams of becoming a ballerina behind, she altered her athletic journey becoming a multi-marathon runner.

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

From misdiagnosis to empowerment, Rachel Hyman and Cathy Gildenhorn share their real stories of being diagnosed with a rare disease, Wolfram Syndrome, in adulthood.

Pruitt was born with ornithine transcarbamylase (OTC) deficiency, hear from his mother Jordan Kruse and geneticist Dr. Susan Berry about the condition and how healthcare can do better.

Sally Pirie opens up about the condition that has plagued her family for decades: Hereditary Angioedema Type III (HAE-3).

Sarita Edwards on parenting through Trisomy 18 and building a global support network.

Sarita Edwards on parenting through Trisomy 18 and building a global support network.

Music can change everything: for children with vision loss, it opens a world of opportunity. Founder of Vision Through Music shares about the program with a current student.

Carissa Carroll shares how her non-profit empowers 11,000+ families, educates professionals, and celebrates babies with Down syndrome. 

Fellow podcasters Wunmi Bakare and Dima Hendricks open up about their experiences living with sickle cell disease and how they have become advocates.

Author Laura Kieger educates on the hereditary cancer syndrome, Familial Adenomatous Polyposis (FAP).

Parent Laura Bonnell shares about her two daughters who were diagnosed with cystic fibrosis which lead to her advocacy.

Podcaster, Father and Advocate shares about his daughter and how he created adaptive toys and products for others in the disability community.

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.

Author and advocate Tanita Allen shares about the delay in her accurate diagnosis of Huntington’s Disease and living with the condition.

Charismatic Colleen Gioffreda shares her experience living with dwarfism including her roles at Johns Hopkins, Little People of America, and as a mother.

Genetic Counselor Amy Patterson shares about genetic screening and testing available for rare disease including her speciality of skeletal dysplasia.

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.