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CDKL5 Alliance Membership Update

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.

Organizational autonomy is critical to this endeavor.  

The IFCR joined CDKL5 family groups from around the world in 2017 to form the CDKL5 Alliance. We were committed then, as we are today, to collaborating with other CDKL5 groups, fostering relationships, and learning from one another.  

Recent developments, including changes in Alliance leadership and the adoption of a new charter, have made it so that we are unable to continue our membership in the CDKL5 Alliance at this time.

While we understand that it may be disappointing to see our organization exit, we want CDKL5 groups around the world to know that we continue to value collaboration and look forward to future opportunities where we can work together for CDKL5. 

Hope | Love | Cure