The Rare Diseases Clinical Research Network would like to welcome our 14 new consortia! For more information, please see below, and stay tuned for future updates!
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.
Important Update
Please be advised that some of our consortia will be continuing their research outside of our network and their information will no longer be found within the network web sites.
As we make this transition, we will provide our patients and families with available web sites or contact information so that you may continue to be in contact with your rare disease consortium.
The following consortia will no longer be operating within the Rare Diseases Clinical Research Network. Please click on one of the links below for more information:
| CLiC - Cholestatic Liver Disease Consortium |
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| Rare Genetic Steroid Disorders Consortium |
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| Bone Marrow Failure Consortium |
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| Rare Lung Diseases Consortium |
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| Rare Thrombotic Diseases Consortium |
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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.
Active Clinical Research Consortia: Our New Consortia:
Autonomic Rare Diseases Clinical Research Consortium Brain Vascular Malformation Consortium Dystonia Coalition Hereditary Causes of Nephrolithaisis and Kidney Failure Consortium Immune Disorders After Allogeneic HTC Consortium Inherited Neuropathies Consortium Lysosmal Disease Consortium |
Nephrotic Syndrome Consortium Primary Immune Deficiency Treatement Consortium Sterol and Isoprenoid Diseases Consortium Molecular and Epidemiologic Characterization of Salivary Gland Carcinmonas Consortium Porphyria Rare Disease Clinical Research Consortium Spinocerebellar Ataxias Clinical Research Consortium North America Mitochondrial Diseases Consortium |
View all RDCRN open studies >>>
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.
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