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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.

Exciting Announcement
UK Family Day
Sunday 9th June 2024

We welcome you to join us on this, our 6th Family Day which is being held at

THOMLEY in Worminghall Buckinghamshire

https://thomley.org.uk/

Time – 10am to 3.30pm

SATB2 Gene Trust UK Family Day SUNDAY 9TH JUNE 2024

Place – THOMLEY
Menmarsh Rd, Worminghall HP18 9JZ

https://thomley.org.uk/

Time – 10am to 3.30pm

We would love you to join us on this, our 6th Family Day.

We are proud to announce this years SATB2 UK FAMILY DAY will once again be held at Thomley which is an amazing venue with a wide range of safe space with soft play area, sensory room, teenage den, art & craft room, face painting, individual play rooms filled with wonderful toys and a wonderful outside play area.
Last year was a huge success and we welcome you to join us on our 6th year for a chance to meet other SATB2 families, share advice and stories, see old friends and make new ones.
There is a cafe on site where you can purchase hot or cold food or you are welcome to bring your own.
Your whole family is welcome, siblings, Grandparents and carers. If you would like bring a carer/support for your SATB2 child/adult to help you on the day you are very welcome to.
We will be joined by the Cerebra Network who have been doing reserach and working with us now since 2018 looking at behaviour in children and adults with SATB2-associated syndrome.
For all families joining us on this wonderful day, in order for us to make necessary arrangements please complete the google form
Support for families to help cover costs incurred to attend the SATB2 UK Family Day is available by completing the following form
We look forward to seeing you there.

If you have any queries please do contact me at mariasatb2uk@gmail.com

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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