Family Connect

The Malan Syndrome Foundation is a nonprofit organization working  to establish a strong community of support for families affected by Malan syndrome.

This form is to register your family with the Malan Syndrome Foundation and only intended for the parents (or guardians) of individuals with Malan syndrome (NFIX variant). To learn more about how your data is protected, please refer to our Privacy Policy

*If you are a family member (grandparent, sibling, aunt, uncle, etc) of an individual with Malan syndrome, please do not submit this form. Instead, scroll down to the bottom of this page and subscribe to our website for general mailings.

By submitting my personal information, I understand and agree with the privacy policy. To opt-out of Family Connect, please contact us at


The information provided on this website is not intended to be a substitute for professional medical advice. No images on this site may be used without the written consent of the Malan Syndrome Foundation.

  • Twitter Social Icon
  • Grey Facebook Icon
  • Grey Instagram Icon

Use of this website constitutes acceptance of the Privacy Policy and Terms of Use.

© 2020 Malan Syndrome Foundation Inc. All rights reserved