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 Joins Social Media Anonymous (not verified) Wed, 06/01/2016 - 10:00

The RDCRN social media presence aims to increase awareness of rare diseases, as well as assist with protocol accrual and registrations for the RDCRN Contact Registry.

RDCRN Launches New Website to Better Serve Desktop and Mobile Users Anonymous (not verified) Sat, 01/02/2016 - 10:46

The new website features a streamlined layout of page content and navigation - making it easier for users to search for rare diseases studied under the RDCRN, find information about the RDCRN studies, search for patient advocacy groups associated with the RDCRN, and join the RDCRN Contact Registry.