We are thrilled to announce the appointment of Robyn Raphael as the Executive Director of the International Foundation for CDKL5 Research (IFCR). 

Robyn joins IFCR with a deep commitment to patient advocacy, nonprofit leadership, and strategic growth. Her extensive experience in the rare disease space, combined with her academic background—including a Master’s degree in Public Policy— gives her a unique perspective on creating meaningful impact at both the community level and through broader organizational partnerships. 

Robyn brings over 25 years of experience in nonprofit management, where she has consistently championed the voices of patients and families, built collaborative partnerships, and implemented innovative approaches to nonprofit development and community growth.  

As Executive Director, Robyn will work closely with the IFCR Board of Directors, Scientific Advisory Board, families, researchers, and global partners to drive forward our mission: to find treatments and a cure for CDKL5 Deficiency Disorder (CDD), and to support affected individuals and their families every step of the way. 

In Robyn’s own words: 

“It is an honor to join the IFCR community. I am inspired by the resilience and dedication of the families, researchers, and advocates who have worked tirelessly to bring CDD into the light. I look forward to building on the incredible foundation IFCR has established and working together to accelerate progress toward a cure.” 

We are confident that under Robyn’s leadership, IFCR will continue to grow as a catalyst for scientific discovery, clinical advancement, and compassionate support for the global CDKL5 community. 

Please join us in welcoming Robyn Raphael to the IFCR family, and read her bio here!