We had many questions and few answers, and we sought to find them.
The SOX6 Foundation was founded in 2025, by a family affected by the SOX6 gene variant (TOLCAS syndrome).
When we started, we asked ourselves what we could do to truly make a difference.
We saw three big needs:
There’s still very little scientific knowledge about the SOX6 gene variant.
Very few people receive a diagnosis, and information is scarce.
Those who are diagnosed often feel isolated, with no one to share their journey with.
Our mission is to focus on what can make a real difference today:
01.
Support research that helps doctors and scientists better undestand SOX6 gene variants (TOLCAS syndrome)
02.
Gather real stories and data from families to build a clearer picture of the condition.
03.
Create a community where affected families can connect, share, and feel supported.
Vision and Values
Vision
Our vision is that the SOX6 gene variation will be understood, that it will be globally recognized by healthcare professionals and institutions, and that all those diagnosed will reach their greatest potential.
We understand potential as the ability for each individual to bring their own contribution into the world, whether that shows up through work, creativity, sports, building a family, or expressing one’s authentic personality.
We recognize that for a person with a SOX6 gene variation, this path can be harder. That is precisely where the Foundation steps in.
Values
01.
We aim to be research-driven, to act with solidarity and empathy towards our community. We will be experts in our field.
02.
We will collaborate with other healthcare institutions, organizations in the third sector, and key stakeholders. We will create community.
03.
We will be transparent with our processes, actions, and communication. We are committed for the long run.
By doing this, we hope to bring clarity, connection, and a sense of hope to everyone affected by a SOX6 gene variant.
Join our data collection program
Through our partnership with Global Genes & RARE X, we are proud to announce the first comprehensive data collection program for TOLCAS syndrome.
