Enjoying Sunset

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Family Connect

 

If your child has a diagnosis of Malan syndrome, join our contact registry.

 

Families in our contact registry will receive information (by email) on the following:

  • advancements in care and treatment

  • opportunities to participate in research

  • connections with other families in your local area or country

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.