Welcome to the PCDH19 Alliance
“We are so glad you have found us. You have likely recently heard the words, “PCDH19 Epilepsy” for the first time and have found us while searching for answers and information. Some of you have been on this journey for several years, and you may be feeling relief to finally have a diagnosis. If your child is very young, you may still be dealing with the shock of the initial seizures. You may be feeling a mix of different emotions that you don’t quite understand yet. Wherever you are on your personal journey with PCDH19 Epilepsy, we have been there, and you are not alone. We are here to support you, and provide you with information.
While getting a diagnosis of PCDH19 Epilepsy may seem devastating, do not lose hope. The PCDH19 Alliance believes in a better future for our children and ultimately a CURE. Together, our families work tirelessly to raise awareness and funds for research because we believe that a cure is out there, and together we will find it.”
– Julie Walters | Executive Director of the PCDH19 Alliance