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Information for doctors and patients, the steps you need to take action. The Rare Diseases Clinical Research NetworkThe Rare Diseases Clinical Research Network
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Where do I need to go?

Welcome! You have reached the home page for the Rare Diseases Clinical Research Network (RDCRN). Each Consortium within the network provides detailed information on several rare diseases.

What if I am unsure of which consortium to visit?

Scan the list to the right for a disease name. Once you have located it, click on the link for a brief description which will lead you to the correct consortium.

How will this consortium be useful to me?
You can take action! Once you have reached the correct consortium, you will be able to join the contact registry for clinical research trials. You will also find several helpful resources that include participating clinical center information, support and advocacy group information and other useful links.

Rare Diseases Clinical Research Network Member Login

Rare Diseases Media Center

CPAG Web Site

Click here for RDCRN Clinical Studies

RDCRN Consortium Studies are opening!
Learn More >>
Last Updated: 25 March 2009

Look here for information on open studies and future studies

bullet Clinical Research Consortia Clinical Research Consortia :

Urea Cycle Disorders Consortium [Study Information]

Angelman, Rett, and Prader-Willi Syndromes Consortium [Study Information]

CINCH - Consortium for Clinical Investigation of Neurological Channelopathies [Study Information]

Bone Marrow Failure Consortium [Study Information]

CLiC - Cholestatic Liver Disease Consortium [Study Information]

Vasculitis Clinical Research Consortium [Study Information]

Rare Genetic Steroid Disorders Consortium [Study Information]

Rare Thrombotic Diseases Consortium [Study Information]

Rare Lung Diseases Consortium [Study Information]

Genetic Diseases of Mucociliary Clearance Consortium [Study Information]

bullet RDCRN NewsNews:
RDCRN Newsworthy

January 21, 2008: BMFDC Principal Investigator Dr. Jaroslaw Maciejewski featured in recent Newsweek Article: MY TURN: Falling Into a Medical Abyss

Rare Diseases Research Conference The Rare Diseases Clinical Research Network held a one-day conference focused on conducting clinical research in rare diseases. View Submitted Abstracts From the Conference | Conference Web Site

November 28, 2007: Feature Article: On the Trail of Rare Disease by Pete Thompson. The New Physician, Nov 07.

February 8, 2007: Rett Syndrome Research Foundation Press Release: REVERSAL OF SYMPTOMS IN AN AUTISM SPECTRUM DISORDER - Rett Syndrome is reversed in genetic mouse model.

Parents' Guide to Medical Research - Provided by the Children's Hospital Boston: Information about clinical research for parents who are deciding about participation of their children in trials and studies. Includes an interactive video and tutorial as well as questions to ask researchers. Children's Hospital Boston Web Site >>> 

July 6, 2006: The News & Observer, Raleigh, NC: Grants spur work on 'orphan' drugs

RDCRN Makes Contact Registry Available for Download - to Facilitate Those Without Internet Access! Check your consortium web site for more details...

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Archives:

May 5, 2006 Press Release: NIH Launches Clinical Studies Nationwide to Investigate Rare Diseases

NIH Establishes Rare Diseases Clinical Research Network
View Full Story >>

Events

2008 Vasculitis Symposium
The Vasculitis Foundation is hosting its 8th International Symposium for patients, family members and medical experts to discuss the most current information on vasculitis including advances in diagnosis, treatment and research.
June 6-8, 2008
Mayo Clinic, Rochester, Minnesota
Information:
www.vasculitisfoundation.org/news/2007/12/28/8th-international-vasculitis-symposium

About the RDCRN
The Rare Diseases Clinical Research Network (RDCRN) was created to facilitate collaboration among experts in many different types of rare diseases. Our goal is to contribute to the research and treatment of rare diseases by working together to identify biomarkers for disease risk, disease severity and activity, and clinical outcome, while also encouraging development of new approaches to diagnosis, prevention, and treatment.