Are YOU Interested in Research on Rare Diseases?

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Join the RDCRN Contact Registry

Receive the most current information on:

  • :: open recruitment for clinical studies of your disease
  • :: opening of new clinical sites doing research on rare diseases
  • :: activities from affiliated awareness and advocacy groups

...and future opportunities to participate in research!

YOU can help in the fight against rare diseases

Register Today!

Maintaining the Relationship Between Patients and Researchers is Vital!

Participation in Research Makes it Possible for Researchers to:

  • :: provide the best possible care to patients affected by rare diseases
  • :: improve methods in studying your disease
  • :: achieve deeper understanding of your disease and its causes
  • :: find new treatments
  • :: create new studies

The RDCRN has over 150 clinical sites available, and is adding more every day! View All Studies >

Network Resources

CPAG

Rare Diseases Media Center

RDCRN Research Login

The Rare Diseases Clinical Research Network (RDCRN) is made up of 22 distinctive consortia and a Data Management and Coordinating Center that are working in concert to improve availability of rare disease information, treatment, clinical studies, and general awareness for both patients and the medical community. The RDCRN also aims to provide up-to-date information for patients and to assist in connecting patients with advocacy groups, expert doctors, and clinical research opportunities.

Find the Research Consortium studying your disease or disorder:

Click on a Consortium Name below to view the diseases or disorders being studied by each consortium. Clicking on a disease or disorder name will take you directly to a description of that disease or disorder.

  • [+] Frontotemporal Lobar Degeneration Clinical Research Consortium (FTLD CRC)
    • Frontotemporal lobar degeneration (FTLD)
    • Behavioral variant frontotemporal dementia (bvFTD)
    • Primary progressive aphasia (PPA)
    • Semantic variant primary progressive aphasia (svPPA)
    • Nonfluent variant primary progressive aphasia (nfvPPA)
    • Frontotemporal dementia with amyotrophic lateral sclerosis (FTD/ALS)
    • Corticobasal degeneration (CBD)
    • Corticobasal syndrome (CBS)
    • Progressive supranuclear palsy (PSP)
    • Pure akinesia with gait freezing (PAGF)

Former Partners of the Rare Diseases Clinical Research Network



About the RDCRN

The Rare Diseases Clinical Research Network (RDCRN) was established by the Office of Rare Diseases Research of (NCATS), National Institutes of Health (NIH) to develop research studies for rare diseases, and to encourage cooperative partnerships among researchers at over 150 clinical centers around the world. This increased cooperation may lead to discoveries that will help treat and perhaps prevent these rare diseases, as well as produce medical advances that will benefit the population in general. The Rare Diseases Clinical Research Network is comprised of a Data Management and Coordinating Center and 22 consortia studying over 200 rare diseases. More About the RDCRN >


NIH does not endorse or recommend any commercial products, processes, or services. The views expressed in written materials or publications do not necessarily reflect the official policies of the Department of Health and Human Services; nor does mention by trade names, commercial practices, or organizations imply endorsement by the U.S. Government. Read Disclaimer >