HH patients and caregivers are truly THE BEST. You continue to sign up for the Rare Epilepsy Network. And when we see discussions on the facebook pages about low tone, escalating weight, precocious puberty, sleepless nights, IEPS, ADHD, anxiety, rages, aggression, and so much more -
it reinforces why we desperately need a registry to identify common problems and get answers!
For those who have not yet joined - the Rare Epilepsy Network is simply a database where all patients and caregivers can input all of this information. Then researchers can access the information to identify patterns. Do you want to know if the side effects you or your child are experiencing are unique to your HH loved one or common to all? A registry is the key that consolidates critical information so it can be translated into research and interventions.
So once again - PLEASE sign up for the REN TODAY Need help? We are standing by to help you - contact
. Hope for HH was featured in the REN Newsletter. Check it out here.