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The SATB2 Gene Trust UK was established to enhance the lives of those affected by SATB2-associated syndrome by providing emotional and educational support, and by raising awareness and supporting research.

DONATE

The SATB2 Gene Trust UK was established to enhance the lives of those affected by SATB2-associated syndrome by providing emotional and educational support, and by raising awareness and supporting research.

IMPORTANT UPDATE – UK FAMILY CONFERENCE POSTPONED

The UK SATB2-Associated Syndrome Conference to be held in Bedfordshire (UK) in 2021 has been POSTPONED due to concerns surrounding COVID-19.

Updates for the next family conference will be posted here.

SATB2 Information Sheets for Families and Physicians

We are excited to share these official information sheets about SATB2 associated syndrome.

Families Download this version as a resource to share with your medical experts clinical team or your paediatrician.

Physicians, therapists, and clinicians –  Download this version to see the common features, information about diagnosing the condition, as well as recommended evaluations and treatments.

  • Severe speech and language anomalies
  • Abnormalities of the palate
  • Teeth abnormalities
  • Behaviour issues with or without bone or brain anomalies
  • Onset before age 2

SATB2 Awareness Day

August 22 marks an amazing opportunity for SATB2-associated syndrome (SAS), the SATB2 Gene Foundation and the SATB2 Gene Trust UK. Because this day is one where we can all come together to spread the word about SAS.

SATB2 UK Family Conference

The SATB2 UK family conference is an annual event for the families to come together to share information, ideas, and experiences and to form long lasting friendships.

Family stories

“I like that with testing and new diagnosis happening all the time, we will get families with SAS children, well into their 40’s who approach the groups looking for information and answers on their recent diagnosis, without realising that their own expertise having managed their children will provide more help for those of us with younger SAS families. So please remember that with this condition only being first described in medical literature in 1989, we are all new at this and we are all learning.”

Edwin Hodges – June 2020

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