Partners
RARE-X is working to build a Data Collection Program for SCAR-15 families. Participating in the SCAR-15 Data Collection Program helps researchers further their understanding of the condition and how it impacts the body. This research aids in the development of new medications, investigations of drug repurposing, diagnostic tests or biomarkers, and other therapies for those impacted by SCAR-15.
The Coriell Institute for Medical research, a global biobank, collecting blood, DNA and cell samples from individuals with SCAR-15. This will allow researchers to study different variants in RUBCN, expanding the knowledge of the genotypic and phenotypic spectrum of SCAR-15. This research can help to model the disease in the lab and to develop treatments targeted to help patients with SCAR-15.
The Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders is an organization for genetic neurodevelopmental disorders, aiding in the advancement of clinical trials. The Jack Bear Foundation is now one of the many foundations partnered with this organization to further research and development of treatments for SCAR-15.
The Orphan Disease Center is a program dedicated to rare disease research, and matching family foundations with researchers interested in studying genetic conditions. This partnership will help researchers interested in SCAR-15 get connected with the Jack Bear Foundation and work towards developing targeted treatments.