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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.

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Let's grow hope together.

What is Malan Syndrome?

Malan syndrome is a rare genetic disorder that is the result of a change in the NFIX gene and is characterized by overgrowth, intellectual disability, vision and/or hearing impairment, skeletal anomalies, epilepsy and anxiety. 

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Join the patient registry to advance research!

The information obtained from the registry will help clinicians and researchers gain a better understanding of Malan syndrome and establish a "standard of care".

OUR MISSION

Our mission is to improve the lives of individuals and families affected by Malan syndrome in the global community through support, outreach and research.

RESOURCES

Learn more about the Malan syndrome support group and online resources for speech, vision/hearing impairment and special needs parenting. 

GET INVOLVED

To help us grow our community and this organization, get involved by joining the patient registry, making a donation, fundraising, volunteering your time, shopping for Malan and MORE.

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