CareSATB2 is our commitment to ensure every person with SATB2-associated syndrome and their families receive the guidance, support, and clinical expertise they need - wherever they live.
Through our CareSATB2 initiative, we are uniting clinicians worldwide to improve diagnosis and management of SATB2-associated syndrome. By developing the first global clinical practice guidelines and establishing the first European (EU) expert center at Radboud University Medical Center, we aim to ensure every person with SAS receives the same high standard of care - wherever they live. In building these evidence-based guidelines, we’ve also identified key research gaps and are now coordinating global efforts to bring clinicians together around a shared research agenda.
Are you a clinican who want to know more, or join our network? Reach out to us at
Key achievements:
- Establishing a clinical network: Starting from a handful of interested clinicians in 2021, now bringing together 70+ clinicians worldwide supporting SAS care (2/3 based in Europe).
- Initiating and leading the development of the first global clinical practice guidelines for SAS with the guidance and support of ERN ITHACA.
- Establishing the first European expert center for SAS within European Reference Network (ERN) at Radboud University Medical Center, Nijmegen, the Netherlands.
These achievements would not have been be possible without substantial caregiver support, as parents mapped all the interested clinicians in our consortium.
First in-person meeting of geneticists and our president on the SAS topic at the ESHG congress in Vienna, 2022.
Our Goals:
Optimal Care – Ensuring optimal care for individuals with SAS no matter where they live.
Accessible Guidance – Evidence-based advice for clinicians and families.
Global Research – Identifying knowledge gaps and uniting clinicians worldwide into co-ordinated research.
Collaboration & Community – Connecting families, clinicians, and researchers while establishing caregivers as equal partners in advancing SAS research.