Learn More About Registering Your Child

Learn More About Registering Your Child

Enrolling in our registry means that you will receive updates about Aicardi syndrome, including notification of any future opportunities for participation in research studies.

Your child’s name and personal information will be shared only with those working on behalf of the Aicardi Syndrome Foundation, unless you give permission for your child’s information to be shared with outside researchers.

The Foundation encourages families to register, in order to support our ongoing research efforts.  We are dedicated to participating in research related to better treatments and improved quality of life, as well as gene discovery.

If you have any questions about registering your child, please email us here.

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