About Us

Our research sets us apart...

"Today much of the discovery based research shows that reversal of abnormal Rett biology is possible through both genetic and pharmacologic intervention. But we must also prioritize the development of forward looking habilitation therapies. As we continue to bring these drug treatments into the clinic to correct the biology, we must push equally hard to discover the best methodologies to reset the neurology. These avenues of therapeutic intervention must converge as they are both fundamental to improving the lives of all of the girls and women with Rett syndrome."

- Steven Kaminsky, Ph.D., Rettsyndrome.org Chief Science Officer


We invest in research

Rettsyndrome.org will coordinate, cultivate, accelerate, and fund research that will produce a cure for Rett syndrome and reveal and develop treatments that will make the lives of people living with Rett syndrome richer and free of pain and discomfort.


Current Research Projects



We empower families

Rettsyndrome.org will assist families of individuals living with Rett syndrome by providing them with connections to critical and useful information, programs, services, and support from diagnosis to day-to-day life.


Newly diagnosed or New to Rettsyndrome.org?


Read more about the diagnosis


Support for families


We advocate & raise awareness about Rett syndrome

Rettsyndrome.org will advocate for and raise awareness about individuals with Rett syndrome so the scientific and medical community, policy makers, educators, care givers, and the general public can more thoroughly know, understand, and be motivated to help the research efforts and individuals dealing with Rett syndrome on a daily basis.


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Rettsyndrome.org's 2018 Impact Report

Click HERE to download the 2018 Impact Report