The International Foundation for CDKL5 Research is proud to announce the launch of two new CDKL5 Centers of Excellence in the Children’s Hospital of Philadelphia and the University of California Mattel Children’s Hospital in Los Angeles. The Philadelphia CDLK5 Center of Excellence was made possible due to the generous support from the Lauren Mary Francis Foundation.
CDKL5 Deficiency Disorder (CDD) is a rare genetic disorder affecting 1 in 40,000 – 60,000 live births. It is characterized by early-onset, intractable epilepsy and neurodevelopmental delays.
Dr. Eric Marsh is the Director of the Philadelphia CDKL5 Center of Excellence; Dr. Rajsekar Rajaraman is the Clinical Lead and Primary Investigator for the Los Angeles CDKL5 Center of Excellence. Each leads a multi-disciplinary team, including specialists in epilepsy, neurology, gastroenterology and genetics. The Centers give families affected by CDD access to a wide range of specialists without the need for making multiple appointments.
Families can make appointments at the Philadelphia CDKL5 Center of Excellence by contacting the Clinic Coordinator Odell Richardson at firstname.lastname@example.org. To make appointments at the Los Angeles CDKL5 Center of Excellence, families can contact Clinic Coordinator Angela Martinez at email@example.com.
The IFCR now has eight CDKL5 Centers of Excellence in the United States – more than any other country in the world. Our Centers give families affected by CDD access to specialists they cannot find in their hometowns. The Centers also provide guidance on CDD to physicians and health systems internationally.
The Lauren Mary Francis Foundation funds research towards a cure for CDD. The Foundation raises funds through annual beach horseshoe and golf tournaments.
For more information about the IFCR, please contact the IFCR.