The 22q11.2 Society

Promoting research, diagnosis, prognosis, and management of 22q11.2DS & related disorders

About Us


To promote both basic science and clinical interdisciplinary research into the biology of the 22q11.2 region, and the diagnosis, prognosis and management of related disorders.

A subsidiary goal will be to exploit the knowledge so gained for the benefit of populations of individuals with more common conditions.

As such, we will endeavor to:
  • Promote collaborative and international partnerships in understanding features associated with chromosome 22q11.2 abnormalities
  • Support the provision of guidance in best practice care
  • Facilitate research surrounding causes, clinical features and treatment
  • Encourage collaboration and communication between clinicians and researchers in studying these conditions
  • Raise awareness and promote education throughout a broad range of clinical communities and the general public
  • Strive for the highest ethical standards in research and clinical practice involving children and adults affected by these conditions


To be the international leader in promoting research related to the chromosome 22q11.2 region.

Disclaimer: Please note the 22q11.2 society is primarily an academic organization and not a forum providing discussion or individual advice concerning care.

Initial Aims

The formation of the society was first muted at a meeting in London, UK, during early 2013 with the idea of formalising existing international activities and promoting new initiatives.

For example we envisage establishing sub-groups to promote research into specific areas:
  • Genetic Modifiers Consortium
  • Brain Behavior Consortium
Promote the interests of junior faculty working in the area and endeavour to attract the best young researchers into the field.

Maintain the clinical guidelines for managing patients with 22q11.2 deletion syndrome.


The 22q11.2 Society Registered Charity No. 1165896