June 03, 2017

Robert Desnick, PhD, MD, and Cynthia Tifft, PhD, MD, have been chosen by the National Organization for Rare Disorders (NORD) to receive 2017 Rare Impact Awards.

June 02, 2017

Projects supported under this program must involve collaboration with investigators from at least three different CTSA hubs and are intended to support the development of new technologies, methods or approaches to overcome roadblocks in translational science.

June 01, 2017

NIH has announced a mandate requiring use of a single Institutional Review Board (sIRB) review for multi-site federally-funded studies. The intent of the mandate is to increase efficiency, uniformity, and reduce the time to obtain IRB approval for multiple sites on the premise that individual sites submitting research to their local IRBs is costly, results in duplication of effort, results in inconsistencies among sites, and delays implementation of research.

June 06, 2016

The Porphyrias Consortium (PC) seeks to continually improve the diagnosis and treatment of the eight major porphyrias.

June 05, 2016

Investigators from the 'MILES' (Multicenter International LAM Efficacy of Sirolimus) trial recount the unique path it took seeking FDA review of their drug.

June 04, 2016

The American Partnership for Eosinophilic Disorders (APFED) is one of several Patient Advocacy Groups collaborating with the Consortium of Eosinophilic Gastrointestinal Disease Researchers to conduct research. APFED provides support in many ways, such as engaging the patient community, participating in committee work, and even pledging supplement funding to support future research.

June 03, 2016

An article published in Orphanet Journal of Rare Diseases shows the integral partnership between RDCRN investigators and the associated patient advocacy group members, as well as how this partnership has enhanced recruitment for protocols, study design, and consortium training programs.