What is SAS?
SATB2-Associated Syndrome (SAS) is a rare neurodevelopmental disorder, caused by alterations to the SATB2 gene. People with SAS are often nonverbal, have dental issues and a higher risk of fractures. Many also face seizures and sleep disturbances. Despite the challenges, persons with SAS are known for their friendly personalities and unique smiles.
Meet our heroes
Who we are
SATB2 Europe is led by parents and caregivers whose lives have been shaped by SAS. We know the challenges, the uncertainty, and the strength it takes, because this is our daily reality. Our children are at the heart of everything we do. United by love and determination, we come together to create a different future - one with better care, meaningful treatments, and greater independence for all living with SAS.
Clinical Practice Guidelines for SAS
SATB2 Europe is currently leading the project of creating the first international Clinical Practice Guidelines for SAS. The project is co-chaired by Professor Dr. Yuri Zarate and brings together more than 50 clinicians and experts from around the world, alongside 18 parent representatives. Together, we are ensuring that both professional expertise and family experiences help shape future care.
The Care4SAS survey is an important part of the project and will help fill in important knowledge gaps that have been identified. By participating, caregivers will help the consortium develop both relevant and useful recommendations, that can improve the care for people with SAS. The survey will be open until June 30th and is available in English, later also in Spanish and French.
Every response matters!
The Care4SAS survey can be reached through the closed Facebook groups, through our local ambassadors or by emailing your interest to us (see Contact).
What we do
We turn lived experience to action, connection and lasting change for affected families across Europe and beyond.
Learn more about the three initiatives that shape everything we do:
Help us improve SAS lives!
Every person with SAS deserves the chance to enjoy better health, receive the right medical assistance and live a more independent life. That's why we promote research and build the foundation of accessible, clinical care.
Your support helps us improve the lives of people with SAS and give their families urgently needed hope. Every donation brings us closer to effective therapies, appropriate care and treatments that ultimately can reverse SAS symptoms.
