Dr Deborah Bruns: Guest Speaker

We are pleased to welcome Dr Deborah Bruns as a guest speaker at our SOFT UK Family Day on 9 May 2026.

Dr Bruns is Professor Emerita in the School of Education at Southern Illinois University Carbondale. Before her academic career, she worked as an educational therapist in New York City, where she supported young children, including several preschoolers diagnosed with Trisomy 18. This early experience helped shape her long-standing commitment to supporting families and improving outcomes for children with rare conditions.

Since 2007, Dr Bruns has been the Principal Investigator of the Tracking Rare Incidence Syndromes (TRIS) project — a global initiative that brings together families, researchers, and professionals to better understand rare genetic conditions such as Trisomy 13 and 18.

During her session, Dr Bruns will provide an overview of the TRIS project and share insights into its recent work, including publications, collaborations, and outreach efforts. The project has played an important role in building a more accurate and compassionate understanding of rare conditions, helping to challenge outdated perceptions and highlight the lived experiences of families.

Attendees will also learn more about the resources available through the TRIS project, including informational modules and real-life case studies that can support both families and professionals.

There will be an opportunity for questions, giving families a chance to engage directly and gain valuable insights.

Dr Bruns’ work continues to make a meaningful difference to families around the world, and we are honoured to have her join us to share her knowledge and experience with the SOFT UK community.

To find out more please visit - TRIS Project | SIU