From Canada to Australia to the USA, to the U.K., New Zealand, Ireland, Germany, South Africa, Belgium, Spain, Poland, the Netherlands and France - my quest to find others like us who are affected by PVNH is equal to those of the families that find us. Most importantly, PVNH Support & Awareness TM and Ella have touched countless people. There are now 152 families in 13 different countries our support community – all have a PVNH or neuronal heteropia confirmed diagnosis. Many more have additional cortical disorders and all support by joining our quest for answers.
Whether it is moms and dads needing support; families dealing with rare disorders who happen to stumble on Ella’s story or families looking for answers with regards to a diagnosis that is in line with Ella’s disease (PVNH) in particular or another neuronal heterotpia disorder, PVNH Support & Awareness TM and Ella have a voice around the world.
And that’s just the beginning!
Please help me broaden PVNH Support & Awareness TM and Ella’s horizons by sharing our story. And your story.