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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. 

Key Resources

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Join our patient registries to advance research!

In order to improve care and develop treatments, clinicians and researchers need to have a better understanding of Malan syndrome. Natural history studies collect real-world data that is essential for research and understanding how a disease develops over the course of a lifetime. 


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


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


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.

A note to our community and supporters:

All corporate documents are available here or upon request per applicable state and federal laws. From the inception of this organization, the Board has consulted with experienced nonprofit professionals to make sure all legal requirements and best practices for nonprofit governance are adhered to. The Board will continue to seek professional services and guidance as the organization grows.

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