The Lived Experience

The Lived Experience was founded at Columbia University in 2019. It is a documentary film series, sharing stories of people and families living with genetic diagnoses or genetic risk. Each time we meet to screen a film, we are joined by people who are affected with the diagnosis being highlighted. Sometimes we are joined by people from the film themselves - the picture above is from our January 2020 inaugural event during which we screened "Rare" and were joined by two people featured in the film.

We learn about the struggles and joys, success and barriers that accompany living with chronic disease. Through this experience, our students integrate more deeply the potential human meaning and impact of the genetic information that they are learning to master in their coursework, furthering their commitment to patient support and advocacy.  

Topics over the past several years have included:

  • Epilepsy
  • Hereditary breast and ovarian cancer
  • Cystic fibrosis
  • Duchenne muscular dystrophy
  • Choroideremia
  • Sickle cell disease
  • Huntington disease
  • Access to abortion services
  • Inclusive education for children with disabilities
  • Visual representation of people with genetic diagnoses