Through our partnership with Global Genes & RARE X, we are proud to announce the first comprehensive data collection program for TOLCAS syndrome.
What are the benefits of joining the database?
01.
Data is de-identified and owned by you (caregiver). You choose who you want to share your de-identified data with (healthcare professionals, researchers, pharmaceutical companies, etc.)
02.
When this data is analyzed, it gives us information about what to expect of the syndrome and counselling future families
03.
It could help us in evaluating the effect of treatments / therapies
04.
If a clinical trial were to be started, it would be easy to identify potential canditates
04.
It makes all of our community’s invaluable input and knowledge available in an organized way
We hope you can join us, so that the SOX6 gene variant (TOLCAS syndrome) can be better understood by families, healthcare professionals and society at large!
