Welcome

Welcome

A warm WELCOME to the families and care providers of newly diagnosed patients with the STXBP1 disorder. Here are 3 quick and easy ways to join in with us right away.

Just follow these 3 Easy Steps:

  1. Visit and bookmark our website: stxdisorders.org
    Make this your first stop and main destination to learn more about all-things related to STXBP1
  2. Join in our online community: Parents of Kids with STXBP1 on Facebook
    Use our Facebook Group as your best source to stay current with updates and as an ideal, safe place to connect with other parents and care providers 
  3. Register in our database: Simons VIP Connect
    Provide your patient and family history along with bio-samples to be studied by researchers looking to find a cure. Simons is a secure, independent 3rd party organization that connects us with researchers worldwide. And the Simons staff keeps all our data current with annual check-ins on each family. Details about our group are here.

Together we will find a cure.