The TS Alliance has just submitted the Voice of the Patient report to the US Food and Drug Administration (FDA). This report summarizes the Patient-Focused Drug Development (PFDD) meeting that we held on June 21. The PFDD meeting was designed to communicate to FDA the impacts of TSC on individuals’ daily lives, what types of treatment benefits make the most impact on peoples’ lives, and individuals’ and caregivers’ perspectives on how well available therapies are working. The report is now available on our PFDD page.
TS Alliance Chief Scientific Officer Steve Roberds, PhD, serves on the Advisory Council of the National Institute of Neurological Disorders and Stroke. During the open session of the Advisory Council meeting on September 7, 2017, NINDS staff discussed several upcoming funding opportunities: As part of an NIH-wide initiative to enhance diversity in the research workforce, NINDS soon plans to reissue a RFA for NIH Blueprint D-SPAN (F99/K00) award with a due date in December (see the previous RFA for reference). The purpose of the D-SPAN program is to support a defined pathway across career stages for outstanding graduate students who…
Nominations are being accepted until April 15, 2017, for the Manuel R. Gomez Award. This award is given in memory of Manuel R. Gomez, MD, the “Father of TSC” in the USA. Dr. Gomez provided care and compassion for hundreds of individuals with TSC during his career, and he sparked interest in the diagnosis and clinical care of individuals with TSC. A nominee should be someone who has made a significant impact on our understanding of TSC in research and/or impacted the delivery of clinical care for individuals with TSC.
Welcome to the new TSC Alert, a monthly electronic newsletter for TSC researchers. It provides updates on TSC research resources, conferences and clinical studies, as well as news that may be relevant to investigators in the field.