Links to websites of groups that study or provide information about Rett syndrome.
General Information
- Rare Diseases Clinical Research Network
The network provides a brief overview of Rett syndrome's symptoms
- International Rett Syndrome Foundation
The foundation provides a list of frequency asked questions. - National Library of Medicine (NLM)
The NLM provides information and links to additional resources on the Genetics Home Reference: Rett Syndrome and Medline Plus: Rett Syndrome information pages.
Services, Resources, and Support
- Genetics Home Reference
The Genetics Home Reference provides consumer-friendly information about the effects of genetic variations on human health. - International Rett Syndrome Foundation
The mission of the International Rett Syndrome Foundation is to fund research for treatments and a cure for Rett syndrome and to provide information, programs, and services for those living with the syndrome.
- Rett Girl
This website is a resource and referral site for families who have daughters with Rett syndrome. Search for a healthcare provider.
Please note: Links to organizations and information included on this page do not indicate endorsement from NICHD, NIH, or HHS.
- Angelman, Rett, and Prader-Willi Syndrome Consortium
This NICHD-supported consortium is a group of academic medical centers, patient support organizations, and clinical research resources dedicated to conducting clinical research in genetic and neurodevelopmental disorders. Its goal is to improve the care of patients with Angelman syndrome, Prader-Willi syndrome, and Rett syndrome. - Intellectual and Developmental Disabilities Branch (IDDB)
This NICHD Branch’s 2009 Report to the National Advisory Child Health and Human Development Council (PDF 1.01 MB) summarizes its information on funding and progress in research for several diseases, including Rett syndrome. See in particular pages 8 and 22 to 24. - National Center for Biotechnology Information
The center provides access to biomedical and genomic information. Its MECP2-Related Disorders webpage includes information about classic Rett syndrome. - National Organization for Rare Disorders
The organization’s Research Grant Program provides small grants to academic scientists who are studying new treatments or diagnostics for rare diseases. - International Rett Syndrome Foundation (IRSF)
IRSF sponsors the International Rett Syndrome Phenotype Database (InterRett), a database run by the Telethon Institute for Child Health Research website. InterRett was established in 2002 to collect information about children and adults with Rett syndrome of any age from around the world. Data from InterRett is linked into RettBASE. - Zoghbi Laboratory
The laboratory of Dr. Huda Y. Zoghbi, a longtime NICHD grantee, has produced work on Rett syndrome that has helped to greatly advance the field. Dr. Zoghbi is a professor in the Departments of Pediatrics, Molecular and Human Genetics, Neurology, and Neuroscience at Baylor College of Medicine. She is also an investigator at the Howard Hughes Medical Institute and the director of the Texas Children's Jan and Dan Duncan Neurological Research Institute.
Please note: Links to organizations and information included on this page do not indicate endorsement from NICHD, NIH, or HHS.
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