Patients and researchers affiliated with the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)
February 24, 2020

A strong collaboration between researchers and patient advocacy groups in the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) is demonstrating how partnering with patients can accelerate discoveries for rare diseases.

Rare Disease Day at NIH
February 18, 2020

Interested in learning more about the Rare Diseases Clinical Research Network (RDCRN)’s fourth funding cycle and hearing stories of patient engagement in research? Plan to visit the RDCRN’s poster and exhibit table at Rare Disease Day at NIH on Friday, February 28 in Bethesda, Maryland. If you’re not able to attend in person, follow the action on social media using the hashtags #RDDNIH and #RDCRNPatientPartners.

Rare Diseases Clinical Research Network
February 11, 2020

With a focus on the patient and hope for a cure, the National Institutes of Health’s Rare Diseases Clinical Research Network (RDCRN) is launching a new logo.

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. Read the announcement.

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.