The parents of children with PACS1 understand that to obtain research we need to advocate and make physicians and society aware of the PACS1 Syndrome.  We participate in Research, we attend Rare Syndrome Conferences and maintain a Social Media Presence on Facebook.

We are pleased to announce that we have partnered with National Organization for Rare Disorders, Inc. (NORD) to raise funds for research.

We have also updated our page title to Schuurs-Hoeijmakers (PACS1) Syndrome, named after the doctor who discovered the mutation, in order to match the current terminology found online.