DiscoverLife and ScienceCombating the fragmentation of data and disciplines: Innovation hubs to address rare diseases
Combating the fragmentation of data and disciplines: Innovation hubs to address rare diseases

Combating the fragmentation of data and disciplines: Innovation hubs to address rare diseases

Update: 2022-05-30
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This podcast is adapted from a webinar launched by Science Magazine, with the support of Fondation Ipsen.




Innovation hubs could provide a viable option to leverage common goals and opportunities, providing shared protocols for handling phenotypic, clinical, and genetic data, while also prioritizing and amplifying the voices of patients living with a rare disease. They could bring together the best international policy structures to streamline efficient and effective medical and scientific advances in rare disease detection, diagnosis, and treatment. This webinar brings together key opinion leaders to discuss the current and future needs of patients, and how innovators, doctors, scientists, drugmakers, and policymakers can work efficiently together to deliver solutions to the millions of diagnosed and undiagnosed patients in need.


 


With:
Marshall Summar, M.D. (Children’s National Hospital, Washington, DC)
Zizi Imatorbhebhe, M.B.A., M.S., P.M.P (ERGOMED PLC, Raleigh, NC)
Anna Lehman, M.D. (University of British Columbia and Vancouver General Hospital, Vancouver, Canada)
Vinodh Narayanan, M.D. (TGen, Phoenix, Arizona)
Sean Sanders, Ph.D. (Moderator, Science/AAAS, Washington, DC)


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Combating the fragmentation of data and disciplines: Innovation hubs to address rare diseases

Combating the fragmentation of data and disciplines: Innovation hubs to address rare diseases

Life and Science