The International Foundation for CDKL5 Research (IFCR) is pleased to announce the addition of two new CDKL5 Centers of Excellence in the United States – Monroe Carell Jr. Children’s Hospital at Vanderbilt located in Nashville, TN and The Children’s Hospital at Montefiore Medical Center located in Bronx, NY. The addition of these two sites brings the number of CDKL5 Centers of Excellence in the US to ten. 

We are thrilled to welcome Jesus Gonzalez to our team as Executive Director!

Since our start in 2009, the IFCR has been led by passionate and dedicated CDKL5 parent volunteers. From a small group of families to now a global community of affected patients that continues to grow, it is time for the IFCR to keep growing as well. The hiring of our first Executive Director is an exciting step!

The IFCR has been proudly serving the CDKL5 community since 2009. As a nonprofit organization, we have a duty to fulfill our mission – to treat and cure CDKL5 Deficiency Disorder by funding scientific research, while helping affected individuals and their families to thrive.

Quality of life of caregivers and patients, as well as future direction of research, are discussed in detail for this rare and extremely severe disorder

Register now!

We asked Marinus to tell us more about their new Expanded Access Program (EAP) for ganaxolone.