RDCRN Launches Contact Registry to Connect Patients, Researchers and Advance Rare Disease Research kristin.stec@c… Mon, 03/14/2022 - 09:04
Three icons featuring a trio of silhouettes, a chemistry flask and stethoscope, and a contact card appear next to the text, Join Our Contact Registry - Learn about opportunities to participate in our research, receive information about our work, connect with our consortia and patient advocacy groups. rdcrn.org/registry appears next to the Rare Diseases Clinical Research Network logo

The Rare Diseases Clinical Research Network (RDCRN) is launching a contact registry to connect rare disease patients with researchers and advance rare disease research. The registry will collect and maintain the contact information of people who want to receive information about rare diseases research. It will also inform participants about opportunities to participate in research.

NIH Announces New RDCRN Funding to Bolster Rare Diseases Research Collaborations RDCRNadm Fri, 10/04/2019 - 11:21

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. Read the announcement.

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.

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.

Rare Disease Research Training Program Anonymous (not verified) Sun, 01/03/2016 - 10:53

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.