The SAS community is where hearts, families, and science unite for a better tomorrow.
For families living with a rare disease, connection is everything. Beyond medical care, people long for understanding, shared experience, and the comfort of knowing they are not alone. Community turns isolation into strength — and that is exactly what we're creating together.
When SATB2 Europe was founded in 2021, only three national SAS organisations existed in Europe - UK, France, and Spain. Many families felt alone in their own countries, and few clinicians had met more than one SAS patient. Even SATB2 researchers told us they needed a larger “tribe.”
We set out to change that, by reaching out to every European organisation, local group, and individual family we could find. The many conversations that followed, revealed shared hopes and challenges across countries. We decided that we'd join forces to become stronger in areas such as awareness, research, clinical expertise and international coordination, while the local communities continue supporting their families in their own languages and cultural contexts.
Thanks to the openness and dedication of caregivers and national organisations across Europe, our community has grown stronger every year:
- By connecting more families with clinicians experienced in SAS, we are jointly building the foundations of a European clinical network.
- Volunteers are translating and proof-reading information to make it accessible for more families.
- Parents have presented their SAS children at international research events, bringing the human story to the forefront.
- National communities have helped us link researchers, clinicians, and labs interested in SATB2/SAS.
- Key information and awareness materials are now shared across borders.
(Photos: Families meeting in Denmark, Italy, Portugal, France)
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Connected locally - united internationally
For the first years after SAS was identified in 2013, our global community lived entirely online. The international Facebook groups still serve as lifelines where families and professionals support each other, share knowledge, and never feel alone. We highly recommend these two virtual spaces to meet the international SAS community:
- SATB2 Syndrome (2q33.1) and Glass Syndrome — Private FB group for families and caregivers
- SATB2 Syndrome Research Community — Private FB group for families and professionals focused on science, symptoms, and treatments
Today, SATB2 Europe helps bridge online connection with real-world support through a growing network of local ambassadors in nearly every European country. Ambassadors welcome new families, and can often help them find local therapists, clinics, schools, and social services, as well as connect them with the national organisation.
Our European collaboration is at the heart of everything we do, and together with our partners overseas, SATB2 Gene Foundation (USA) and SATB2 Connect (Australia), we are part of a truly global movement.
Across borders, languages, and experiences, we are proving one simple truth:
When families and professionals unite, we create meaningful change - for every person living with SATB2-associated syndrome.
We warmly invite you to join our community - reach out to SATB2 Europe, your national organisation, your local ambassador, or the international Facebook groups. You are not alone!