Congratulations to Paul Orchard, MD, and the University of Minnesota Medical School for their award of a $360,000 grant from the Rosenau Family Research Foundation to establish a registry for Krabbe disease! This project aims to gather critical data to improve the understanding, diagnosis and treatment of Krabbe disease.
With patient consent, the registry will collect clinical information, genetic data and patient outcomes to support families and researchers. The project is unique because it brings a community-driven approach by collaborating with advocacy groups and families to obtain information, which includes patient progress, challenges and needs. This will help expand knowledge on the variability of the disease process and the anticipated outcomes of the patients affected with Krabbe.
Read the press release here: https://med.umn.edu/…/u-m-medical-school-receives…
To follow along with Paul Orchard’s grant work, visit our website: https://rosenaufoundation.org/orchard-2024/