October 04, 2019

The National Institutes of Health (NIH) has awarded approximately $31 million in grants in 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.

Dr. Rothenberg
February 28, 2019

Dr. Rothenberg, the Principal Investigator for CEGIR, has been awarded the highest honor bestowed by the International Eosinophil Society for his major contributions to the advancement of our understanding of the eosinophil.

NEPTUNE
February 27, 2019

NEPTUNE has embraced the concept of Precision Medicine proposed by the Institute of Medicine in 2011. The Precision Medicine strategy proposes the development of new disease definitions generated by a multilayered analysis of the disease course while patients receive their usual clinical care in observational studies.

PIDTC
February 27, 2019
The PIDTC conducts multi-center studies of primary immune deficiency (PID) diseases and aims to expand the understanding and improve treatments and outcomes for patients with rare PIDs.
CReATe
February 27, 2019

Through a recently awarded Clinical Trial Readiness grant from NINDS, CReATe investigators are now tapping into the invaluable resource that is the CReATe Biorepository in an effort to clinically validate leading biological fluid-based biomarker candidates to aid the design and implementation of future clinical trials.

BBD
February 27, 2019

Through research, the BBDC is discovering new biomarkers of the disease that will lead to a deeper understanding of underlying pathophysiology of OI as well as assessing response to therapies

CEGIR
January 05, 2018

The creation of the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) incorporated the patient perspective into the decision-making process for eosinophilic gastrointestinal disorders (EGIDs), improving the research and collaborations for these conditions. Three CEGIR patient advocacy groups provide insight into the differences that CEGIR has made for their organizations and for individuals with EGIDs.