SATB2 Europe

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We are a non-profit organisation supporting research and healthcare for individuals affected by SAS.

Official name is: Evropska fundacija SATB2, ustanova za SATB2 sindrom
English translation: European Foundation for SATB2-Associated Syndrome

22/08/2026

Let's show the SAS smiles to the world, everyday, but today even more so 😃🥰🫠

Wishing you all a wonderful, peaceful, playful, loving or simply regular 💜

20/08/2026

Dear caregivers and supporters!

So many things are happening currently in SAS research and clinical care that we hardly find time to update you regularly!
Since day is around the corner, we wish to share some exciting updates we have been working on in the past months besides the amazing project!

Today we are higlighting the project that started this spring and aims to accelerate the search for therapies by existing medicines - an approach that can be much faster and less costly than developing new drugs from scratch.

The research is being carried out at the Faculty of Pharmacy, University of Ljubljana, Slovenia, led by Doc. Dr Dunja Urbančič and her PhD candidate Lana Svečko.

This is the first drug-repurposing research project specifically focused on SATB2-Associated Syndrome, and we are especially fortunate that a dedicated PhD candidate will be able to carry out this work as part of their doctoral research.

The team will use patient-derived stem cell models and transform them into cortical neurons, the brain cells most affected by SAS. Using artificial intelligence, large-scale biological datasets, and computational drug screening, they will identify existing medicines that could potentially correct disease-related cellular changes. The most promising candidates will then be tested in patient-derived neurons using advanced high-throughput imaging.

We will do our best to complement any future project in drug-repurposing starting anywhere else in the world!

And there is more...stay tuned 😊🥳

Satb2 Italia SATB2 Gene Trust UK Asociación Satb2 Association française du SATB2 SATB2 Polska SATB2 Connect SATB2 Brasil SATB2 Gene Foundation Glass syndróm/SATB2/SLOVENSKO

28/07/2026

📢 iPads Communication Grant Opportunity!

Thanks to the generosity of Dignity Memorial, the SATB2 Gene Foundation is awarding five communication grants to help individuals with SATB2-Associated Syndrome access an iPad, protective case, and a choice of AAC app (Proloquo2Go, TouchChat HD, or LAMP Words for Life).

🌎 Open to both U.S. and international families.
📅 Applications open on July 27th and are due by Monday, August 10, at 5:00 PM ET.

If your family has had difficulty obtaining a communication device through insurance or your school system, we encourage you to apply. Separate applications are required for each eligible dependent.

Learn more and apply today! https://form.jotform.com/261804681369162

11/07/2026

🎉What an amazing response to the survey!!! A heartfelt THANK YOU!!! 🎉

We have collectively shown that anything is possible when we come together as a community, that's the spirit! 🙌🤝💪🤩

Every contribution is invaluable, is bringing new insights and is informing the real-world needs of individuals with SAS and their families.

As many of you experienced firsthand, this was a very comprehensive survey. Because it covered so many aspects in such depth, analysing all the responses thoroughly is also a substantial task and will take some time.
The careful analysis is essential, as the findings will directly inform the clinical recommendations in the first Clinical Guidelines for SAS.

💜Thank you once again for your time, effort, and valuable contribution. Stay tuned for updates! 🫶

SATB2 Gene Foundation, SATB2 Gene Trust UK SATB2 Connect SATB2 Gene Trust UK Association française du SATB2 Asociación Satb2 Satb2 Italia SATB2 Polska Glass syndróm/SATB2/SLOVENSKO &BE

30/06/2026

Wonderful news - we are very close to reach the goal and you can still contribute - we have extended the deadline until 5th July!

Huge thank you to all caregivers taking the time to share your experiences!
WHAT A GREAT COLLABORATIVE EFFORT of SAS Community
💜💜💜🥳🥳🥳😇

25/06/2026

Big 'Thank You' to all caregivers already sharing their experinces through this important survey!

We still need more than 50 families to participate to make this survey a valid resource for shaping the first worldwide clinical care recommendations for people with SAS!
Your response matters, so don't miss out this opportunity!!!

Please respond by 30th June.
Survey link available in closed SAS groups and through local communities!

19/06/2026

Spanish version of the Care4SAS survey is now available - big thank you too all volunteers making this possible!🙌

Now all you have to do is to participate 🫶

The link to the survey is available in closed SATB2 or through you local communities!

Asociación Satb2 SATB2 Gene Foundation
Thank you!!

17/06/2026

We are happy to share that the survey is now available in French as well!
A huge thank you to all volunteers making this possible!!!

Dr. Zarate explaining why we need Your experiences to be able to provide best recommendations for individuals with SAS!

The survey is open until 30th June, so don't delay!
Thank you!!!

Association française du SATB2

16/06/2026

initiative - creation of the first global clinical practice guidelines for SAS with over 50 clinical experts from across Europe, UK, Canada, USA ,Brazil, Australia and UAE together with 18 caregivers, representing 11 countries and all international SAS organisations SATB2 Europe SATB2 Connect SATB2 Gene Foundation

12/06/2026

📢 Are You Caring for a Person with SATB2-Associated Syndrome (SAS)?

We would love to hear from you!

The Survey is part of an international effort to develop the first global clinical practice guidelines for SATB2-Associated Syndrome.

The project is co-chaired by Professor Dr. Yuri Zarate, the world's leading expert in SAS, and brings together:
🌍 More than 50 clinicians and experts from around the world
👨‍👩‍👧‍👦 18 parent representatives
🤝 A truly global collaboration that combines professional expertise with lived family experience

By participating, you will help improve understanding of SAS and contribute to better care, support, and future guidance for children and families living with SAS worldwide. Your experiences will help the consortium develop formal recommendations that empower families and clinicians advocating for better care for people with SAS.

⏱️ The survey takes approximately 45–70 minutes to complete, depending on age and the complexity of health needs. We know this is a significant time commitment, but your voice is crucial.

📅 The survey will be open from 12–30 June.

🌐 The survey is currently available in English and will later become available in Spanish and French and perhaps in some additional language. If your primary language is different, please consider asking a family member, friend, or another caregiver fluent in both languages, to help you complete it.

❤️ Thank you for being part of .

🔗 The survey link is available in closed SAS groups: https://www.facebook.com/groups/1267355970084242/
https://www.facebook.com/groups/185098831860332/
If you cannot access it, please reach out to us and we will be happy to help.

Address

ŠENTJOŠT NAD HORJULOM 54A
Horjul
1354

Website

https://www.satb2europe.org/

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