Who we are
Led by families. Built for change.
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.
Find out more
W e a r e p r o u d m e m b e r s o f :
What is SAS?
SATB2-Associated Syndrome (SAS) is a rare neurodevelopmental disorder caused by changes in the SATB2 gene. The gene provides instructions for making the SATB2 protein (shown above), which plays an essential role in the development of the brain, jaw, teeth, and bones. Since SATB2 interacts with many other genes and proteins, even small changes can affect multiple body systems.
As a result, people with SAS may be nonverbal, have dental abnormalities, and face a higher risk of fractures. Many also experience seizures and sleep disturbances. Despite these challenges, individuals with SAS are known for their friendly personalities and unique smiles.
S t a t s f o r E u r o p e
Real families. Real stories. Shared strength. 18-year-old Melina works hard every single day, without complaint or hesitation. She is a true fighter - a young woman who teaches lessons of patience, courage, and love through her actions rather than words. In a world that often treats her as if she doesn’t belong, she continues to shine with kindness and grace. Real families. Real stories. Shared strength. Meet Celeste, the non-verbal girl with the most iconic SAS smile! It took her 19 months to learn to walk, 6 years to say her first word, and 9 years to slam her first door... Knowing the hard work she puts in to achieve any step of independence keeps us astonished. We couldn’t be prouder to be her advocates! Real families. Real stories. Shared strength. Clara never gives up. She is non-verbal but knows how to swim, bike and ride a horse. She has her own pace to achieve new milestones, but she is so proud of herself when she does. Clara's smile can light up the darkest of rooms! Her resilience and creativity inspires us as she approaches every new challenge with enthus... Real families. Real stories. Shared strength. Łukasz faces significant challenges in speech and daily tasks—but his spirit is unstoppable. Now 18, he communicates with assistive tech, is learning independence, and recently achieved a long-time goal: swimming. His joy, determination, and love for people shine through every day. Łukasz reminds us that even small vic... Real families. Real stories. Shared strength. Jaša Despite setbacks, the love, perseverance, and specialised support from Jašas family have helped him make remarkable progress - like speaking his first words and learning to use a communication device. Every small victory is hard-won, but for Jaša and his parents, each step forward is a testament to hope and resili... Real families. Real stories. Shared strength. Urban is joyful. Curious. Full of life. He is non-verbal, but gosh, he is chatty and communicates all the time with the help of his communication device and also by using around 30 gestures and 3 spoken words.
Meet our heroes
Meet our heroes
Meet our heroes
Meet our heroes
Meet our heroes
Meet our heroes
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:
O u r m i l e s t o n e s
How far we’ve come
- 2020
- Our board members met for the first time
- 2021
- Established SATB2 Europe Foundation
- Connected with families all over Europe and beyond
- Our first SATB2 virtual round table (had participants from 23 countries)
- 2022
- Newsletters in 7 languages
- Start of the clinical network creation
- Become members of EURORDIS
- 2023
- Second virtual research round table
- 2024
- Guideline work initiated at ERN ITHACA
- 2025
- Formation of our Medical and Scientific Advisory Boards (MAB and SAB)
- Formally established the Expert Center for SAS at Nijmegen
- Launched a local SAS ambassadors’ network in Europe
- Accepted into Rare Disease Factory program at Czech Center of Phenogenomics
- 2026
- Started a drug-repurposing project
- Landing ERDERA networking support scheme grant
- Consensus meeting in Slovenia
- Launching the new webpage
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.
Frequently asked questions
Simple answers for families, supporters, and professionals who want to learn more about SAS and SATB2 Europe.
What is SATB2-associated syndrome?
SATB2-associated syndrome, or SAS, is a rare genetic neurodevelopmental condition caused by changes in the SATB2 gene. It can affect development, speech, learning, behavior, dental health, sleep, seizures, feeding, and bone health.
What are common signs of SAS?
Common features can include developmental delay, limited or absent speech, dental differences, feeding difficulties, sleep challenges, behavioral differences, seizures, and bone health concerns. Not every person has the same symptoms, and the severity can vary widely.
How is SAS diagnosed?
SAS is usually diagnosed through genetic testing. A diagnosis is made when a disease-causing change, deletion, duplication, or disruption involving the SATB2 gene is found. Families should discuss testing and results with a qualified medical professional or genetic counselor.
Is there a cure for SAS?
There is currently no simple cure for SAS. Care usually focuses on supporting development, communication, feeding, sleep, seizures, dental health, bone health, and other individual needs. Research and clinical guidance are important parts of improving future care.
How are donations used?
Donations help support SATB2 Europe’s work in family support, awareness, research collaboration, clinical guidance, and community-building for people affected by SAS.
