Unique Path to FDA Approval Following an RDCRN Trial Anonymous (not verified) Sun, 06/05/2016 - 10:33

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

Working Together to Find Answers: An Example of Patient Advocacy Group Involvement Anonymous (not verified) Sat, 06/04/2016 - 10:27

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.

RDCRN Investigators and Patient Advocacy Groups – A Partnership Anonymous (not verified) Fri, 06/03/2016 - 10:25

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.

RDCRN Sponsored 4th Conference on Clinical Research for Rare Diseases Anonymous (not verified) Thu, 06/02/2016 - 10:21

The Rare Diseases Clinical Research Network (RDCRN) sponsored the 4th Conference on Clinical Research for Rare Diseases (CCRRD) on Thursday, November 3, 2016 in Washington, D.C.

Genetic Disorders of Mucociliary Clearance Consortium (GDMCC): Patient Advocacy Perspective Anonymous (not verified) Fri, 04/04/2014 - 11:18

When my daughter was diagnosed with primary ciliary dyskinesia (PCD) in 1991, after seven long years of looking for answers for her chronic lung infections, my first question was 'who is doing research on this disorder?'...