Rare Diseases Clinical Research Network (RDCRN)
NIH - May 09, 2013
Under a $70 million NIH grant to study rare diseases, I provided strategic direction and content for the very first RDCRN web site. I also served as patient advocate and clinical trials educator to patients, with rare blood diseases.
Part of my responsibility was to help patients understand the pros and cons of participating in a clinical study. I also helped coordinate between Cleveland Clinic where the studies were conducted and various pharmaceutical companies, sponsoring the clinical studies.