Patient Advocacy
Patient Support and Advocacy Groups

Patient advocacy groups specializing in Rett syndrome, MECP2 Duplication disorder, and Rett-related disorders are here to help you. They are devoted to providing support, resources, and services for patients and families. Join these groups to help yourself, your family, and other patients.

You may find information on advocacy from the specific disease websites:

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Rett Syndrome:

www.rettsyndrome.org

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Rett Syndrome Research Trust:

www.rsrt.org

MECP2 Duplication Syndrome:

www.mecp2duplication.com

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International Foundation for CDKL5 Research:

www.cdkl5.com

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International FOXG1 Foundation:

www.foxg1.com


Or more generally from:
The Office of Rare Diseases Research rarediseases.info.nih.gov
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National Organization for Rare Disorders (NORD) www.rarediseases.org