Christy Zigler, PhD MSEdDuke University School of Medicine This project really stared with the Foundation for Angelman syndrome Therapeutics (FAST), a patient advocacy organization. They came to Duke’s Center for Health Measurement in 2018 with a goal: to improve the...
Eline AlonsHU University of Applied Sciences The ability to communicate is a prerequisite for participating in daily life. Yet, communication does not always come naturally. Some children grow up with communication problems, such as difficulty speaking (e.g.,...
Rubina Shah, MSc MPH;1 Andrew Finlay, FRCP;1 and Sam Salek, PhD RPh FFPM FRPS2 1 Cardiff University, School of Medicine2 School of Life & Medical Sciences, University of Hertfordshire The impact of disease on the quality of life of patients’ partners and family...
Andrea Johnson, PhDUniversity of Toronto Approximately 20% of children and adolescents diagnosed with cancer will not survive their disease. This means that a significant number of children and adolescents will live with advanced cancer and likely use pediatric...
Kyle Kemp, PhD, and Robert Klaassen, MD FRCP(C)2023 Annual Conference Co-Chairs We are much honored to be the Scientific Program Co-Chairs of the ISOQOL 30th Annual Conference. This year’s conference will be held in Calgary, Alberta, Canada from October 18-21, 2023...
