Are you looking for additional resources regarding Koolen-de Vries Syndrome, health conditions, education, rare disorders, etc? Please visit the following resources for additional information. This page will be updated with new links and resources as we find more information which may be useful to our families.
Please contact us to suggest additional resources for inclusion.
1. Visit the Human Disease Genes website for the most up-to-date disease management and surveillance strategies and recommendations.
2. After receiving a diagnosis of Koolen-de Vries Syndrome, it is advised to work with a primary care physician such as a Geneticist or Pediatrician to determine which follow up tests may be appropriate and to determine a plan of care.