Role & Impact
Rettsyndrome.org is a 501c(3) non-profit corporation registered as The International Rett Syndrome Foundation and established in 2007 through the strategic merger of the Rett Syndrome Research Foundation and the International Rett Syndrome Association.
Rettsyndrome.org’s mission is to fund research for treatments and a cure for Rett syndrome while enhancing the overall quality of life for those living with Rett syndrome by providing information, programs, and services.
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.
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.
Advocacy & Awareness
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.
What is Rett syndrome
Rett syndrome is a rare genetic postnatal neurological disorder that occurs almost exclusively in girls and leads to severe impairments, affecting nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily. The hallmark of Rett syndrome is near constant repetitive hand movements while awake. Cognitive assessment in children with Rett syndrome is complicated, but we know that they understand far more than they can communicate to us, evidenced by their bright and attentive eyes, and their ability to express a wide spectrum of moods and emotions.