At last year’s EHDN & Enroll-HD Conference in Strasbourg, we had the privilege of interviewing Siri Hagen Kjølaas, Ph.D., to discuss her groundbreaking research on the psychosocial challenges faced by families living with Huntington’s Disease (HD).

Siri, who earned her Ph.D. from the University of Oslo, explored the experiences of children growing up in HD-affected families. These children often face emotional and psychological challenges due to the progressive nature of the disease, including distress linked to genetic risks and the difficulty of discussing the condition within the family. Her research revealed a critical need for enhanced, tailored support systems for both children and parents in HD-affected families.

Siri’s findings also highlighted the essential role of external social support in alleviating these challenges. Support for not just the affected parent, but also the non-affected parent and children, has proven vital in promoting resilience and well-being.

Through her work, Siri emphasizes the importance of developing systematic approaches to support HD families. She advocates for tailored interventions that address gaps in social support and improve communication within the family unit. Her research lays the foundation for more effective support strategies, which she continues to implement in her role at the Center for Rare Disorders, helping healthcare providers better assist families impacted by HD.

To learn more about Siri’s impactful research, explore her work here.