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

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.

January 04, 2018

Dr. Rauch, a pediatrician with Metabolic and Genetic Bone Disorders and the Director of Clinical Laboratories at Shriners Hospitals for Children in Montreal, has been awarded the Charles Slemenda Award in recognition for his important work in pediatric bone disease research.

January 03, 2018

Dr. Tiina Urv is the new director of the Extramural Research Program in the Office of Rare Diseases Research (ORDR). She leads the Rare Diseases Clinical Research Network (RDCRN), a multidisciplinary national program. As the NCATS Program Director for RDCRN, Tiina collaborates with 10 NIH Institutes to manage 21 consortia and a central Data Management and Coordinating Center.

January 02, 2018

The creation of the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) has changed the paradigm of collaborative efforts for eosinophilic gastrointestinal disorders.

CCRRD 2018
January 01, 2018

The Rare Diseases Clinical Research Network (RDCRN) is sponsoring the 5th Conference on Clinical Research for Rare Diseases (CCRRD) on Thursday, October 4, 2018 in Washington, D.C.

June 05, 2017

The National Center for Advancing Translational Sciences (NCATS) at NIH is keenly interested in seeing more research studying rare diseases in which efforts and expertise are pooled across research groups and diseases to identify commonalities and shared targetable mechanisms. The intention is that such collaboration will increase efficiency and capacity in the development of new therapies compared to traditional approaches that focus within a single disease.