Cure

CureSATB2 is our mission to bring life-changing treatments and therapies to people living with SATB2-associated syndrome.

We are dedicated to driving international research that leads to targeted treatments and, one day, a cure. Our goal is to give every individual with SAS a healthier, more independent life. At the heart of CureSATB2 is patient-centred collaboration and science. We bring basic researchers, translational researchers, clinicians and caregivers together to explore opportunities, create solutions, and share hope.

Interested in joining our network of excellence? Reach out to This email address is being protected from spambots. You need JavaScript enabled to view it..

Key achievements

We've established a network of researchers interested in the SATB2 gene/protein and SAS.
Our SATB2 Virtual Research Roundtables have gathered attendants from up to 24 countries and 15 research labs.
We've helped researchers gain access to scientific resources such as mouse models, patient testimonies and iPSCs through our networks.
We administrate the SATB2 Syndrome Research Community on Facebook which now has 700+ members.
Our team landed a grant for developing an inducible SATB2 mouse model.
We regularly share SAS research news such as published papers, studies looking for participants and grant announcements on our social media.
Our team members have authored and contributed to several published papers on SAS.
We've recruited some of the most excellent minds to our Scientific Advisory Board and Medical Advisory Board.

Our approach

Our strategy to advance SATB2- and SAS-related research and collaboration can be summarised in five main points:

Building a global network
• Expanding the community of SATB2/SAS-focused researchers and clinicians.
• Partnering with organisations, hospitals, universities, laboratories, companies and other key stakeholders.

Fostering scientific collaboration
• Creating opportunities that connect experts across all translational research segments.
• Hosting events where caregivers, researchers, clinicians, and industry partners can learn from each other.

Strengthening scientific resources
• Growing and increasing access to essential resources such as the clinical registry, animal models, natural history studies and the human biobank.

Promoting and supporting research
• Actively collaborating in scientific studies.
• Connecting potential participants from the SATB2 community with ongoing research and clinical trials.
• Funding or granting high-impact SATB2-related research projects.

Sharing Knowledge
• Communicating updates on academic publications, active studies and trials, available resources, grant opportunities, and other important developments.

SATB2 Virtual Research Roundtables

Curious about our previous roundtables? Check out the documentation below.

SATB2 VRT 2023

We invited researchers, families and clinicians to gather at our second SATB2 Virtual Research Roundtable in 2023.
The response was again amazing and besides families almost 30 professionals signed up for the event.

Insights on new studies were shared, an important discussion on scientific resources was held and SAS awareness was raised among participants. Below, you’ll find the agenda, the speakers and a link to the recording of the event.

Recording (Youtube)

Agenda Speakers

SATB2 VRT 2021

We invited researchers, families and clinicians to gather at our first SATB2 Virtual Research Roundtable in 2021.
The response was huge with nearly 120 participants from 23 countries!

Insights on newly published and unpublished works were shared, important collaborations were sparked and SAS awareness was raised among both professionals and caregivers. Below, you’ll find the agenda and summary for the event.

Agenda Summary

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.