Karen Utley

Patient Advocate and Caregiver

Karen is the co-founder of the International Foundation for CDKL5 Research (IFCR), an organization that funds research and provides family support for patients and caregivers affected by CDKL5 Deficiency Disorder (CDD). In this work over the past thirteen years, she has learned the importance of community building and ensuring the patient is the center and focus through all stages of treatment development. With her daughter’s diagnoses with CDD, she became an expert in advocacy, community building, as well as representing her community in discussions with researchers and industry. She has served in a leadership role in efforts across developmental epilepsies with the Epilepsy Leadership Council, Rare Epilepsy Network, as well as being involved with NORD, Global Genes, and EveryLife Foundation. She also holds a BSN and is a licensed registered nurse. She is committed to improving the lives of those facing rare diseases.