Family Connect

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

Family Connect is a contact registry. It will be used to inform individuals with Malan syndrome or their parents/guardians about:

  • advancements in care and treatment

  • opportunities to participate in research

  • other Malan families that live in your area

Submit the form below to register. This form is 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 PolicyThe information stored in the contact registry will be shared only with individuals that are part of the Malan syndrome community and only with prior consent. 

*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

Thank you! Your submission has been received.