Rare Disorders: Why should you care?
Please Note: This event is free to the public, but the cost for these programs is substantial. If you would like to help support the Ethics Center so that we can continue to offer these programs, please contact The Center for Ethics in Science and Technology to discuss options for a tax deductible donation.
Date & Time
Wednesday, February 1, 2017, from 5:00-7:00 PM.
Join us from 5:00-5:30 PM for a half hour of refreshments and conversation. Our speaker will begin at 5:30 PM.
Hudson Freeze, Professor of Glycobiology and Director of the Human Genetics Program at Sanford Burnham Prebys Medical Discovery Institute
Dr. Freeze is a Past President of the Society for Glycobiology and current President of the Federation of American Societies of Experimental Biology. Dr. Freeze has earned nearly 40 years of continuous NIH funding in glycobiology. In the last 18 years he focused on the identification and understanding of human genetic disorders, the Congenital Disorders of Glycosylation (CDG), which now number over 100. He collaborates closely with physicians, families and their support organizations and regularly consults on cases while still tracking the genetic basis of multiple patients with unknown glycosylation defects. Prior to his 25 years at SBMRI, Dr. Freeze was a member of the UCSD School of Medicine faculty, and continues there as an Adjunct Professor. He isolated the first extreme thermophile, Thermus aquaticus (Taq), for which he won the 2013 Golden Goose Award.
Collectively rare disorders are more prevalent than cancer and many other commonly known diseases. Even so, in the face of scarce resources, it might seem obvious that something that is rare should warrant little of our attention. But science does not move in a straight line. A case could be made that exploratory, basic research might result in as much or more progress than research targeted only to the most common diseases. These choices must be made in the context of multiple stakeholders including healthcare professionals, scientists, funders of research, regulators, and of course the patients. Join us for this program to better understand the pervasiveness of rare disorders and the kinds of research being done. We will address diverse questions such as: How should scarce research funding be allocated? Who decides what should be done? What should be our role in fostering the best science in the public interest?
There are free lots available behind the Fleet Science Center near the entrance to the Community Forum.
*Please note: Guests are not required to print their tickets.