NIH Awards $29 Million for Rare Disease Research

Oct 14, 2014, 10:00 ET from CurePSP

TIMONIUM, Md., Oct. 14, 2014 /PRNewswire-USNewswire/ -- The National Institutes of Health (NIH) has awarded $29 million to the Rare Diseases Clinical Research Network (RDCRN), which is dedicated to furthering translational research and investigating new treatments for patients with rare diseases.   The RDCRN focuses on facilitating collaboration, study enrollment and data sharing among rare disease researchers, and is comprised of 22 consortia with representatives from 98 patient advocacy groups, including CurePSP.

The RDCRN is overseen by the NIH's National Center for Advancing Translational Sciences (NCATS).  NCATS distinctly focuses on commonalities across diseases and the translational process, rather than targeting a particular disease.  Since the launch of the RDCRN, more than 29,000 participants have been enrolled in more than 90 clinical rare disease studies.

This new NIH funding will establish six new RDCRN consortia, one of which is the Frontotemporal Lobar Degeneration Clinical Research Consortium (FTLD CRC) led by Adam Boxer, MD, PhD, a prominent neurodegenerative disease researcher and CurePSP grantee with the University of California, San Francisco.  Dr. Boxer's Consortium will explore the potential for new treatments for frontotemporal lobar degeneration (FTLD), corticobasal degeneration (CBD) and progressive supranuclear Palsy (PSP).  While the FTLD CRC will be headquartered at the University of California, San Francisco, new clinical studies and trials for FTLD, CBD and PSP will be created at multiple sites across North America, leading to increased opportunity for participation by patients.

"CurePSP recognizes the importance of research through partnerships and collaborative efforts," said Richard Gordon Zyne, DMin, President-CEO of CurePSP.  "We are pleased to endorse and be an active advocacy partner in Dr. Boxer's FTLD Clinical Research Consortium.  Our Foundation will recruit and encourage patients to participate in these new studies."

CurePSP is the foremost non-profit organization dedicated to increasing awareness of progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and other atypical Parkinsonian disorders; funding research toward treatment, cure and prevention; educating healthcare professionals; and providing support, information and hope for affected persons and their families. Learn more at