Leveraging a Rare Disease Center of Excellence

genetictest

(recorded webinar / download slides)

As many patient advocates continue on their journey to become empowered activists, some may learn and want to consider starting a rare disease center of excellence. A center of excellence is a facility or centralized program that brings together a multidisciplinary, coordinated team who provide best practices, family support, and research.

This webinar covers how this can be done, what the obstacles and challenges are, and whether there are other options viewers should consider (like utilizing other centers that already exist). The panelists who are participating will approach this topic from different angels, sharing what they have learned and points to consider.

Panelists:
Kari with iPad2Kari Luther Rosbeck, President & CEO, Tuberous Sclerosis Alliance

Kari has been with the Tuberous Sclerosis Alliance since June 2001 and is responsible for the organization’s management, administration and strategic vision. During her tenure as President and CEO since November 2007, the TS Alliance has helped marshal significant strides in new treatments and groundbreaking research.  Kari has been involved in nonprofit fundraising and volunteer management for 20-plus years and is a board member of the National Organization for Rare Disorders and a member of the American Thoracic Society Public Advisory Roundtable.

 

DrMitaki2Mohamad A.  Mikati M.D., Wilburt C. Davison Professor of Pediatrics, Professor of Neurobiology, and Chief of the Division of Pediatric Neurology at Duke University

Mohamad A.  Mikati M.D., is the Wilburt C. Davison Professor of Pediatrics, Professor of Neurobiology, and Chief of the Division of Pediatric Neurology at Duke University.  He had been on the Faculty at Harvard as Director of Research in the Epilepsy Program at Boston Children’s Hospital, and then as Professor and Chairman, Department of Pediatrics at the American University of Beirut.

Kelly_RKelly Ranallo, Founder and President, Turner Syndrome Global Alliance

Kelly Ranallo is the Founder and President of the Turner Syndrome Global Alliance (TSGA). She has a teenage daughter who was diagnosed with Turner syndrome (TS) in 2006. She served as President of the Kansas City Chapter of the Turner Syndrome Society of the United States from 2008-2013. Kelly joined the Family Advisory Board at Children’s Mercy Hospital and set about building a Turner Syndrome Clinic from within the hospital to address the unmet needs of families in and around the Midwest. The Clinic has since become a national model for providing comprehensive services to girls and families living with TS.

Moderator:
Danny_LevineDaniel Levine, Founder & Principal, Levine Media Group

Daniel Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. Since 2011, he has served as the lead editor and writer of Burrill Media’s acclaimed annual book on the biotech industry and hosts The Burrill Report’s weekly podcast. His work has appeared in The New York Times, The Industry Standard, TheStreet.com, and other national publications.