💜Exciting News! Help Shape the First Global Clinical Practice Guidelines for SATB2-Associated Syndrome (SAS)! 💜

We’re thrilled to announce a major milestone: the First-Ever Global Clinical Practice Guidelines for SATB2-Associated Syndrome (SAS) are in the works! These guidelines will provide crucial support for healthcare professionals around the world, helping ensure individuals with SAS receive consistent, high-quality care, no matter where they live!

Why Are These Guidelines So Important?

Clinical Practice Guidelines are essential for improving patient care by gathering expert knowledge and research into a single, trusted resource. While many common conditions, like diabetes or cancer, already have well-established guidelines, rare conditions like SAS often lack consensus on best practices.

Meet the Team

This exciting initiative brings together currently 60 medical experts and 16 dedicated parent representatives from 13 countries – including the USA, Europe, Brazil, and Australia – all working as part of our SATB2 Consortium. That involves all existing SATB2 organisations worldwide. We are deeply grateful for the commitment and collaboration of everyone involved!

This project is led by Erika Stariha, mother to a son with SAS and president of SATB2 Europe, along with co-leads Dr. Yuri Zarate, Dr. Damjan Osredkar, Dr. Barber Tinselboer (also a mother to a boy with SAS), Charlotte Gaastarland, a skilled methodologist, and Anne Hugon as a project manager from ERN ITHACA (European Reference Network for Rare Malformation Syndromes, Intellectual and Other Neurodevelopmental Disorders) – we greatly appreciate their support!

How You Can Make a Difference

The SATB2 Consortium has identified 48 clinical questions crucial to the SAS community. Now, we need YOUR input to prioritize which of these questions should be addressed in the first Clinical Practice Guidelines. Make sure you read the criteria on which you should base your choice of priority very carefully (the instructions are in the survey itself)!

The survey is available in 8 languages, so we invite you to participate in whichever language feels most comfortable:

 The survey takes about 10 minutes to complete and is open until November 24, 2024.

Let’s make history together! Your participation will directly impact the development of these guidelines, ensuring they serve the needs of our children and the clinicians who care for them.

Thank you for being a part of this groundbreaking journey!