A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Tuesday, March 12, 2013

Webinar - Understanding Drug Development

RARE Webinar Series

Global Genes will be hosting a series of webinars in 2013 geared towards educating and empowering our RARE community.
Upcoming Webinars
Understanding Drug Development: Opportunities for Rare Disease Patients and Advocates to Speed Development of New Therapies
Register here! - March 20, 2013, 11 am Pacific Time

Rare disease drug development is a long and costly process. Though estimates vary widely, it can take as much as $1.5 billion and 15 years to bring a new drug from discovery to the marketplace.  Today, a new world of open source biology and crowd funding give many patient advocates the ability to enter the drug development world. Could a patient’s family, frustrated by the lack of industry interest in a disease, go out and fund research and drug development that could put treatments and cures in reach? The first step is to understand the process of drug development and the points at which you can get involved to accelerate the process. There are many entry points within drug development where patient advocates can and should take an active role, all the way through the FDA approval process.

Panelists include: 
  • Scott Johnson, CEO, President and Founder of the Myelin Repair Foundation
  • Dr. Kenneth Kaitin, Director, Tufts Center for the Study of Drug Development
  • Dr. Bruce Bloom, President and Chief Science Officer of Cures Within Reach

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