Consortia News

The SCID, Angels for Life Foundation, a patient advocacy group of the Primary Immune Deficiency Treatment Consortium (PIDTC), has announced the winners of its 2022 Grant Awards.

The U.S. Food and Drug Administration (FDA) hosted a workshop on July 21, 2021 to discuss the disease characteristics, natural history, and endpoints to assess treatment benefit in patients with eosinophilic gastrointestinal disorders (EGID) beyond eosinophilic esophagitis (EoE). 

Reena Kartha, PhD, MS, was named Rare Disease Difference Maker by Engage Health. Kartha is an assistant professor in the College of Pharmacy at the University of Minnesota and former fellow with the RDCRN’s Lysosomal Disease Network (LDN).

Glenn Furuta, MD, has received the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) 2021 Harry Shwachman Award. Furuta was recognized during the 2021 NASPGHAN Annual Meeting on Monday, December 13.

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.

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

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.