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.
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.
The Certificate program is a 12 month series of in-person and webinar-based opportunities allowing for synchronous and asynchronous learning opportunities to better understand the practical skills required to succeed in rare disease clinical research.
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.
The Rare Diseases Clinical Research Network is an initiative of the Office of Rare Diseases Research. National Center for Advancing Translational Sciences (NCATS) funded through a collaboration between NCATS and the National Institutes of Health.