Did you just get your child's diagnosis? You are not alone in this journey!
If you’ve landed here, chances are you’ve just heard the words no parent is ever prepared to hear: Your child has a rare neurodevelopmental disorder, SATB2-associated syndrome.
We want to begin by saying - we see you. We know this is not the path you planned for your child or your family. The mix of shock, grief, confusion, fear and even numbness you may be feeling right now is completely valid. You are not alone in this moment, even if it feels like the ground has shifted beneath your feet.
This space was created for you and for everyone interested in our journeys. We are a community of parents, caregivers and advocates who have stood exactly where you are standing now. We know the heartache, the questions, and the deep love that keeps you moving forward, even on the hardest days.
Here, you’ll find support, information, and most importantly - connection. With you in mind we've built a waypoint to all our local SAS ambassadors. These represent families living with SAS who are ready to guide you locally - in your country and in your language.
Whether you’re ready to dive into learning more about the diagnosis, the genetics or the symptoms, or just need to sit and breathe, we are here right beside you. Our inbox is at
We also recommend that you check out the closed international Facebook group for SAS families and the Facebook community for SATB2 research updates which also is open to clinicians, therapists, teachers and researchers.
Remember, there is no right or wrong way to process this journey. Take your time. Come back as often as you need. We're honoured to welcome you into a community that understands, and we’re here to help you carry this, together.
With warmth and solidarity,