The International Foundation for CDKL5 Research (IFCR) is proud to be the leading patient advocacy organization for CDKL5 Deficiency Disorder (CDD). Our Board of Directors is made up of passionate and dedicated CDKL5 parent volunteers and has been since our start in 2009. We are true to our mission – to treat and cure CDKL5 Deficiency Disorder by funding scientific research, while helping affected individuals and their families to thrive.
Our Board has created a thriving research, clinician, and patient network. We are the only CDKL5 patient advocacy group to own a patient registry and we have participants throughout the world. Called “Connect CDKL5,” our platform gives families a seat at the table with pharmaceutical companies and researchers and is part of a larger collaborative database ecosystem to better identify individuals living with CDD. By coming together, we are better able to advocate for all those we love who are affected by CDD.
Our CDKL5 Centers of Excellence and the International CDKL5 Clinical Research Network (ICCRN) infrastructure are critical, not only for patient care but to prepare our CDKL5 community for clinical trials of the future. Our Science Director, Heidi Grabenstatter, Ph.D., has a doctorate in neuroscience and is an expert in epilepsy research. She leads our esteemed Scientific Advisory Board, which is comprised of scientists and medical professionals who understand the landscape of CDKL5 research and ensures that the IFCR makes strategic decisions on the research we fund.
No one is better informed or more equipped to lead the CDKL5 patient community than the IFCR. We are passionate about our mission and are collaborative in our approach. Above all else, we are sure of one thing – a unified patient community is paramount to moving CDKL5 forward. We are strongest together.
Would you like to help spread the word about our organization and the important work we do for CDKL5? We have prepared a packet of helpful talking points to assist you. We appreciate your support!
Our work is funded by generous donations from our CDKL5 families and their networks. If you or your organization would like to discuss becoming an ongoing supporter of our work, please contact us.