Newsletter of the NIH Rare Diseases Clinical Research Network
Volume 3, Issue 1. January 2012

www.RareDiseasesNetwork.org

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In This Issue

Message from Alan Percy, MD – Newly re-elected Chair of the Rare Diseases Clinical Research Network

Spotlight on RDCRN Consortia: The Vasculitis Clinical Research Consortium

Arginine Therapy in Argininosuccinic Aciduria and its Effects on Liver Dysfunction –Evidence Based Analysis from a Randomized Clinical Trial

Lessons from the MILES Trial

National Center for Advancing Translational Sciences (NCATS) Established

Collaboration Between RDCRN & CTSA at The University of Kansas Medical Center

The Ride for Rare Diseases: A Model for Consortia Cooperation

STAIR PI Steiner Named Deputy Editor for Genetics in Medicine

RDCRN Opens Over 20 New Studies for Patient Accrual

About Spotlight

Past Issues

Editorial Board

 

Rare Diseases Headlines:

Office of Rare Diseases Research launches web site for Rare Diseases Human Biorepostiories and Biospecimens (RD-HUB)
>> More

Stewardship and Public Access to Research Data
>> More

RDCRN Conditions Approved for Social Security Compassionate Allowance
>> More

Featured Event:

Rare Diseases Day 2012
>> More

Spotlight Announcements / Calendar of Events

Lysosomal Disease Network: WORLD Symposium
San Diego, CA
Feb 8-10, 2012

Feedback

The staff of Spotlight are enthusiastic about the potential of our new publication to enhance communication among those interested in treatment and cure of rare diseases. We are very interested in your thoughts about how Spotlight can be improved. If you have suggestions for future issues, please let us hear from you. You can send your comments to RDNWebmaster@epi.usf.edu.

Spotlight on Rare Diseases
Newsletter of the NIH Rare Diseases Clinical Research Network
www.RareDiseasesNetwork.org

 

Editor

David Robertson, MD
Vanderbilt University

 

Assistant Editors

Cindy Dorminy MEd, LPN
Vanderbilt University

Denise Shereff, MLIS
University of South Florida, Tampa

Jennifer Lloyd
University of South Florida, Tampa

 

Editorial Board

Richard Barohn, MD 
University of Kansas

Robert C. Griggs, MD
University of Rochester

Hyder Jinnah, MD, PhD
Emory University

Peter A. Merkel, MD, MPH
Boston University

Alan Percy, MD
University of Alabama

Jean-Baptiste Roullet, PhD
Oregon Health & Science University

Robert D. Steiner, MD
Oregon Health & Science University