Rare Disease Economic Burden Study and the Impact on Families and Society

April 1, 2021

Marissa Penrod, a patient advocate Mom, and Annie Kennedy, Chief of Policy and Advocacy for the EveryLife Foundation for Rare Diseases, talk about the recently released Rare Disease Economic Burden Study that quantifies the economic impact rare diseases have on families and society. Marissa takes us into the homes and the lives of families living with a devastating rare disease. Both of these patient community leaders explain how this new data will help policymakers and other decision-makers reduce the impact of the tragic public health crisis of untreated rare disease.

Previous Video
Mental Health Services for an Underserved LatinX Community
Mental Health Services for an Underserved LatinX Community

Arturo Carrillo, who has a PhD in social work and is a Licensed Clinical Social Worker, talks about his re...

Next Video
Sue Peschin, President and CEO of Alliance for Aging Research, speaks about priorities in research, legislation, and awareness to benefit fa
Sue Peschin, President and CEO of Alliance for Aging Research, speaks about priorities in research, legislation, and awareness to benefit fa