rettysyndrome is leading the revolution in Rett syndrome research.  In 2016, committed $2.7 million to research services.  To date, over $40 million cumulative research dollars have been awarded by in a quest to accelerate treatments and find a cure for Rett syndrome.  With over 40 active grant and research projects, and 14 sites conducting clinical trials, is boldly moving toward our goal of treating and curing Rett syndrome.

View the Rett Syndrome Public Service Campaign video at also partnered with Newron Pharmaceuticals to create a video which shares inspiring stories from our families.  You can view that at

Rett Syndrome Research Trust

A cure for Rett Syndrome…It’s our obsession.
Imagine the symptoms of autism, cerebral palsy, Parkinson’s, epilepsy, and anxiety all in one little girl. This is Rett Syndrome. Rett Syndrome Research Trust (RSRT) exists for one reason: to make these symptoms disappear. We are focused, impatient, rigorous and optimistic. Whether you are a parent, relative or friend of an afflicted child or adult, we welcome you to our site and invite your participation in our fight to conquer Rett.

International Foundation for CDKL5 Research

The International Foundation for CDKL5 Research is proud to partner with the Rocky Mountain Rett Association to create the first CDKL5 center of Excellence, within their existing Rett Clinic at Children’s Hospital Colorado. Together with an amazing team of specialists, the Rett and CDKL5 clinic is a unique model of comprehensive care for patients. IFCR is a 501(c)(3) nonprofit who is governed by an all-voluntary Board of Directors and a distinguished Scientific Advisory Board. IFCR also has a wonderful group of dedicated Regional Family Representatives who reach out and engage local families affected by CDKL5. Please email us for CDKL5 specific inquiries and support: or visit to learn more about CDKL5 Disorder.

Our Team Silent Angels