apbdrf.org
News Releases | Adult Polyglucosan Body Disease Research Foundation (APBDRF)
http://apbdrf.org/about-us/news-releases
APBD in the media. Dr Or Kakhlon, of Hadassah-Hebrew University Medical Center and Prof. Miguel Weil, Ph.D. of Tel Aviv University have been awarded a biannual $343,000 grant from the Israel Chief Scientist to study the effect of new compounds in APBD. This grant is the largest single grant ever awarded for APBD research, surpassing a 2013 grant from the Association Francaise contre les Myopathies (AFM), which was awarded in 2013. In addition, we are proud to report that the patients, friends, family mem...
fastercures.blogspot.com
FasterCures Blog: Evaluating “Value”: How Do We Foster Innovation in Today’s Cost-Conscious Healthcare Environment?
http://fastercures.blogspot.com/2013/07/evaluating-value-how-do-we-foster.html
Thursday, July 18, 2013. Evaluating “Value”: How Do We Foster Innovation in Today’s Cost-Conscious Healthcare Environment? Two out of three participants in a recent. Workshop believe that patients’ needs and priorities are not driving decisions made by payers, innovators, and providers. To have a stronger grasp on the role the patient can and must play in reimbursement decisions,. And the Cystic Fibrosis Foundation convened a one-day multi-stakeholder workshop earlier this month titled,. Defining what ev...
fastercures.blogspot.com
FasterCures Blog: 3/1/13 - 4/1/13
http://fastercures.blogspot.com/2013_03_01_archive.html
Friday, March 29, 2013. Time=Lives Story of the Week: Sarah and Adam Foye. Kids, DNA and Genetic Testing. Adam Foye, a New-Jersey sixth grader, has lived much of his life with weak muscles and uncertainty. Although his symptoms match most closely with the rare muscular disorder, Centronuclear Myopathy (CNM), his genes tell a different story. The 11-year-old’s tests show no issues with the genes that indicate CNM. Adam’s mother, Sarah, said in a recent TIME story. Additional stories about the power and pr...
fastercures.blogspot.com
FasterCures Blog: 7/1/13 - 8/1/13
http://fastercures.blogspot.com/2013_07_01_archive.html
Thursday, July 18, 2013. Evaluating “Value”: How Do We Foster Innovation in Today’s Cost-Conscious Healthcare Environment? Two out of three participants in a recent. Workshop believe that patients’ needs and priorities are not driving decisions made by payers, innovators, and providers. To have a stronger grasp on the role the patient can and must play in reimbursement decisions,. And the Cystic Fibrosis Foundation convened a one-day multi-stakeholder workshop earlier this month titled,. Defining what ev...
fastercures.org
The Research Acceleration and Innovation Network (TRAIN) - FasterCures
http://www.fastercures.org/programs/train
Science of Patient Input Resources. The Research Acceleration and Innovation Network (TRAIN). Big, transformative ideas in medical research are coming from small but mighty patient-driven foundations. The way they fund and find research are bucking traditional processes. The Research Acceleration and Innovation Network (TRAIN) is a. Program that convenes dozens of forward-thinking foundations to learn from each other and share their novel solutions with the rest of the. Our goal is to:. Designed to help ...
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