Welcome to the Vici Syndrome Organization

Learn. Share. Connect.

New to Vici Diagnosis?

Our community is here to make sure you have the tools and support you need going forward as you navigate the medical, educational, and therapeutic aspects of your child’s life.


We provide valuable information and support to families affected by this rare disorder through a network of associates.

Research & Medical Professionals

For doctors, therapists, teachers and others working with people affected by Vici Syndrome.


Join the Fight to End Vici Syndrome

RARE-X is a collaborative platform for global data sharing and analysis to accelerate treatments for rare disease. Click here to read more. 

The Coriell Institute is providing samples to Vici syndrome researchers. We would like to create a set of Vici syndrome samples (as many as possible). Please consider adding your samples to the collection. This is critical for research that could lead to new drugs or therapies. Click here to read more. 

The Orphan Disease Center (ODC), a center within the Perelman School of Medicine at the University of Pennsylvania,works closely with patient groups and foundations, pharma and biotech, and the academic community to drive therapeutic development for rare diseases. Click here to read more. 



Join our network of families and medical professionals.

Register with the Vici Syndrome Organization to be kept up-to-date and connected with our global fight to find a cure. We use this registration to send out updates and information about our efforts in research, advocacy, and care.

You can be assured that we are fierce advocates fighting for our children — turning obstacles into opportunities — and we will never rest until a cure is found.

Vici Syndrome Foundation, Inc. is a nonprofit, tax-exempt charitable organization (tax ID number 84-3414393) under Section 501(c)(3) of the Internal Revenue Code. Donations are tax-deductible as allowed by law.