FOR SCIENTISTS

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

Quarterly Scientific Roundtable: Path Towards Treatment

MEETING GOALS & GUIDELINES

CSNK2A1 Foundation hosts a quarterly Scientific Roundtable to bring together researchers, clinicians and innovators to exchange ideas and accelerate the path towards treatment for OCNDS. For information or inquiries about our Quarterly Scientific Roundtable, please email at research@csnk2a1foundation.org.

THANK YOU TO OUR RESEARCHERS WHO ARE ALREADY SUCCESSFULLY COLLABORATING. WE WILL CONTINUE TO WORK AT THE FOUNDATION TO PROVIDE SUPPORT AND STRUCTURE FOR CONTINUED COLLABORATION.

OUR COMMUNITY IS INSPIRED BY AND THANKFUL FOR YOUR WORK.

The key to successful rare disease research that leads to actionable therapeutics is Collaboration, Data Sharing and Diverse Thinking.

There are no known treatments for OCNDS but there is hope. Science is catching up. With researchers, clinicians and innovators 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.

We have limited resources and our children have limited time; data sharing discourages duplication of effort in data collection.

In order to find a treatment or a cure we need to look at OCNDS from varying perspectives, ideas, backgrounds and specialties. Data sharing also promotes diverse thinking.

No one wants to be scooped. Unless otherwise specified, all information shared within the quarterly meeting is considered confidential.

APPLY FOR FUNDING

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

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