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NIH Announces New RDCRN Funding to Bolster Rare Diseases Research Collaborations

October 4, 2019

The National Institutes of Health (NIH) has awarded approximately $31 million in grants in the fiscal year 2019 to 20 teams – including five new groups – of scientists, clinicians, patients, families and patient advocates to study a wide range of rare diseases through the RDCRN. An additional $7 million has been awarded to a separate data coordinating center to support these research efforts. These research teams, called Consortia, will work to better understand rare diseases and move potential treatments closer to the clinic. Read the announcement.

Please stay tuned as we update this site over the coming months. Congratulations to all the awardees!

New Data Management and Coordinating Center

Cincinnati Children’s Hospital Medical Center

New Consortia

  • The Global Leukodystrophy Initiative Clinical Trials Network. Lead: Children’s Hospital of Philadelphia
  • Congenital and Perinatal Infections Rare Diseases Clinical Research Consortium. Lead: The University of Alabama at Birmingham
  • Frontiers in Congenital Disorders of Glycosylation. Lead: Mayo Clinic
  • Hyperphenylalaninemia Disorders Consortium. Lead: Oregon Health and Science University
  • Rare Disease Network for Myasthenia Gravis. Lead: George Washington University

Returning Consortia 

  • Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe)
  • Genetic Disorders of Mucociliary Clearance
  • Porphyrias Consortium
  • Urea Cycle Disorders Consortium
  • The North American Mitochondrial Disease Consortium (NAMDC)
  • Dystonia Coalition
  • Brain Vascular Malformation Consortium: Predictors of Clinical Course
  • Nephrotic Syndrome Rare Disease Clinical Research Network III
  • Brittle Bone Disorders Consortium
  • Primary Immune Deficiency Treatment Consortium
  • Consortium of Eosinophilic Gastrointestinal Disease Researchers
  • Developmental Synaptopathies
  • The Inherited Neuropathy Consortium
  • Lysosomal Disease Network
  • Vasculitis Clinical Research Consortium (VCRC)

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