Our mission is to improve the lives of children and families affected by PCDH19 Epilepsy. The PCDH19 Alliance focuses on raising and directing funds to scientific research with the goal of finding better, more effective treatments and, ultimately, a cure.
We’re also here to provide information and support to affected families, assist research efforts and ensure that no family suffers without a diagnosis & the best medical treatment.
We are so glad you have found us. Wherever you are on your personal journey with PCDH19 Epilepsy, we have been there, and you are not alone. We offer a lot of support and resources – here are some ways you can reach out and get involved:
JOIN OURFACEBOOK SUPPORT GROUP
Connect with other families and friends on our private Facebook support group for PCDH19 epilepsy. Let’s support each other, share with each other, and work together to make a difference for our loved ones!
If you or your child has been diagnosed with PCDH19-Related Epilepsy we urge you to enrol in our registry, run by researchers at Boston Children’s Hospital. Your participation could help us find a cure.