In 10 years, the IFCR has grown from being a group of parents of children with CDKL5 Deficiency Disorder to leading the world in developing CDKL5 Centers of Excellence and advocating for the CDKL5 community.
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The International Foundation for CDKL5 Research is the leader in CDKL5 patient education in the English-speaking world. Our free guides give families living with CDKL5 Deficiency Disorder the information and resources they need to help their affected loved one. We also partner with CDKL5 organizations around the world to adapt our guides to the educational and medical processes of their own countries.
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The International Foundation for CDKL5 Research has eight CDKL5 Centers of Excellence in the United States – more than any other country in the world. We are the driving force that establishes and maintains these Centers of Excellence – and more are soon to launch! Our Centers also provide guidance on CDKL5 Deficiency Disorder to physicians and health systems internationally.
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When someone you love is affected by CDKL5 Deficiency Disorder, you want to know about every scientific advance and clinical trial that could help them. Yet, pharmaceutical companies and researchers are not in the habit of reaching out to families – especially when the illness involved is a rare disease like CDKL5 Deficiency Disorder. That is why the IFCR encourages you to participate in our Connect CDKL5 Registry. When we band together, we are best able to advocate for our loved ones.
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The International Foundation for CDKL5 Research’s Scientific Advisory Board reviews every CDKL5-related study published. Our Science Director, Heidi Grabenstatter, PhD, has a doctorate in neuroscience and is an expert in epilepsy research. She leads our Scientific Advisory Board, which is comprised of a team of scientists and medical professionals who make sure the IFCR is on top of the research. This helps us keep our families informed and makes sure the scientific research focuses on creating treatments for our affected loved ones.
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The International Foundation for CDKL5 Research is here to help all those affected by CDKL5 Deficiency Disorder. If your loved one has recently been diagnosed – or if you have just learned of the IFCR – we are here to help you on your CDKL5 journey.
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