22q11.2 deletion syndrome

Information, education, community resources, and research

This section brings together plain-language information about 22q11.2 deletion syndrome, resources for people with 22q and their families, material for educators, and an archive of research activity.

Choose a route below. The information is general and educational; it is not a substitute for advice from a qualified health professional.

Understanding 22q11.2

Start with a brief introduction, then explore terminology, inheritance, and awareness.

What is 22q11.2 deletion syndrome?

A plain-language introduction, with links to current health information.

Names and terminology

Terms used in this area, with a short explanation of their context.

Inheritance and genetic counselling

General information about inheritance, with sources and guidance on where to seek individual advice.

Awareness and recognition

A historical reflection on awareness and recognition of 22q11.2 deletion syndrome.

Families, educators, and community resources

Explore practical material for school settings and a curated directory of support and information.

Working together with schools

Ideas for constructive communication between learners, families, and school staff.

Support organisations and trusted resources

Selected organisations and information sources for families, educators, and researchers.

Research and historical archive

These pages preserve information about earlier research planning, updates, correspondence, and events. They should be read as historical records, not as current recruitment notices or research updates.

Research archive
“Small but MASSIVE” research programme

Background on the programme and its original participatory aims.

Research archive
Research updates archive

A dated record of earlier research-related updates.

Correspondence archive
Earlier family research correspondence

Historical correspondence about an earlier research programme.

Archive · 2017
European 22q Alliance meeting in Dublin

A record of the meeting held in October 2017.