Understanding
Okur-Chung Neurodevelopmental Syndrome
Q2 Scientific Roundtable April 13, 2021
Quarterly Scientific Roundtable: Path Towards Treatment
MEETING GOALS & GUIDELINES
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 .