RDCRN News

The National Institutes of Health (NIH) has awarded approximately $31 million in grants in fiscal year 2019 to 20 teams – including five new groups – of scientists, clinicians, patients, families and patient advocates to study a wide range of rare diseases through the RDCRN. An additional $7 million has been awarded to a separate data coordinating center to support these research efforts. These research teams, called Consortia, will work to better understand rare diseases and move potential treatments closer to the clinic.

The Rare Diseases Clinical Research Network (RDCRN) is sponsoring the 5th Conference on Clinical Research for Rare Diseases (CCRRD) on Thursday, October 4, 2018 in Washington, D.C.

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.

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

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 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.

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.

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.