The MECP2 Duplication Foundation was founded and operated by parents of affected children. Our hope is to provide every newly diagnosed family with emotional support, information, and a community. We are here to support you as we share our stories, help you plan your next steps, and offer ideas for finding appropriate care for your child.
Receiving a MECP2 Duplication Syndrome diagnosis is overwhelming, and you may not know where to begin. The MECP2 Duplication Foundation wants to provide you with the tools to cope with this diagnosis.
Join the MDS Community Mailing List
By signing up for the MECP2 Duplication Foundation email list, you will receive updates on research, the newest family support guides & webinars, and opportunities to connect with families.
The Guide for New Parents
We created this guide to give new parents the information we wish we had received when our children were first diagnosed...
Your child has been diagnosed with MECP2 Duplication Syndrome, so what comes next? We recommend that you read our brief overview of the disorder, contact a family support representative, and register for more information. This is a very difficult time for your family, but you are not alone.
Contact a Family Support Representative
Family Support Representatives provide information and support to families with a diagnosed child. All Family Support Representatives are parents of affected children and will help guide you through your child’s diagnosis, share their journey, and offer community. These volunteer parents are not registered counselors or physicians, but they are dedicated to providing you with support.
If you'd like to be contacted by a Family Support Representative, please use the form on our Contact Us page to submit your request.
Learn More About MECP2 Duplication
MECP2 Duplication Syndrome is an X chromosome-linked neurological disorder occurring most frequently in boys, although it rarely occurs in girls. It results from the over-expression of protein from a duplicated MECP2 gene and causes severe developmental and health-related issues.
Find a Physician
Are you looking for a physician who has experience treating children affected by MECP2 Duplication Syndrome? The following list has been created by affected families based on their experiences.
Find a Doctor
Explore parent-approved resources and physicians for MECP2 Duplication Syndrome Families.
Join the Community
Be a part of the movement that is actively increasing awareness about MECP2 duplication syndrome and creating a community that supports families and strides toward finding a cure.