Health Heroes Helping Patients and Pharma Research with Rare Disease Registries
This episode of the podcast examines how the GM2 Disease Registry will help both patients and the pharma companies working on treatments for them.
Cerner Enviza’s Geneviève Bonnélye-Fesnien and Dan Lewi, Co-founder of The Cure & Action for Tay-Sachs (or CATS) Foundation, discuss rare disease challenges and patient registries with Dominic Tyer from pharmaphorum, the online destination for pharmaceutical news and analysis.
Dan shared the emotional story of caring for his eldest daughter Amelie, who was diagnosed with Tay-Sachs in 2011 at 15 months of age.
This episode also looks at how the GM2 Disease Registry will help both patients and the pharma companies working on treatments for them.
The podcast is rounded out with insights from Geneviève on the current outlook for rare disease.
The Health Heroes podcast series aims to inform and educate life sciences companies on ways for getting closer to patients to help drive improved health outcomes.