FOR SCIENTISTS

There are no known treatments for OCNDS but there is hope because the time is now. Science is catching up and we are funding research that may treat, reverse and cure symptoms for those affected by OCNDS. With researchers like yourselves collaborating and working together, we have the chance to make a meaningful change in the lives of those with OCNDS. We believe collaboration begins with data-sharing. Data sharing enhances the quality of research and transparency. Rare Disease groups have very limited funds and our children have limited time, data sharing discourages duplication of effort in data collection. Data sharing also promotes diverse thinking. In order to find treatment or a cure we need to look at this syndrome from different angles and different specialities. We are committed to working with institutions and researchers that will share biospecimens, cell lines, animals models, and de-identified data.

There are OCNDS patient derived samples and de-identified genetic & phenotypic OCNDS data available to qualified researchers.

 

PATIENT FIBROBLASTS
Sampath Rangasamy, Ph.D
Center for Rare Childhood Disorders (C4RCD)
Translational Genomics Research Institute (TGen)
Phone: 602-343-8533
Email: srangasamy@tgen.org

IPSCs & LCLs
Simons Searchlight
Follow the instructions on the site

K198R MOUSE BRAIN SLICES
Dr. Heike Rebholz
Email: heike.rebholz@inserm.fr

MOUSE MODELS
Jackson Labs

GENETIC & PHENOTYPIC DATA
Simons Searchlight
Follow the instructions on the site

APPLY FOR FUNDING

We are accepting RFPs. Please contact us at: research@csnk2a1foundation.org