PCDH19 Parent Support Group

Caring for a child with PCDH19 can feel overwhelming, but you are not alone. Our Parent Support Group on Facebook is a safe, welcoming space where parents and caregivers can share experiences, ask questions, and find encouragement from others who truly understand.

Wherever you are in the journey, this group is here to offer connection, empathy, and practical insight. It’s a place to feel seen, heard, and supported.

How It Works

  1. Fill out the form below to join the PCDH19 Alliance Parent Support Group and agree to the Terms of Use.
  2. Request to join our Support Group on Facebook. (You must have a Facebook account to proceed.)
  3. If you do not receive an approval notice on Facebook within 5 business days, please send us a message.

Request Access to the Group

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