The Importance of Early Intervention in Rett Syndrome

The Importance of Early Intervention in Rett Syndrome

About Rett Syndrome

Rett syndrome, a rare neurological condition that affects one in 10,000 females and less often in men, begins at 6-18 months. It can cause missed milestones or regression. Rett syndrome can cause severe impairments that affect nearly all aspects of life, including the ability to talk, walk, eat, and breathe. Rett syndrome is characterized by repetitive movements of the hands while awake. Rett syndrome children are difficult to assess cognitively. However, we know they understand more than they can communicate to others. This is evident by their bright, attentive eyes and ability to express a broad range of emotions and moods.

Mutations on the MECP2 gene on the X-chromosome are responsible for Rett syndrome. More than 900 mutations can be found in the MECP2 gene. Early intervention can reduce the severity of the symptoms, improve quality of life, and prevent complications from happening.

We also empower Rett family members to become partners in research that could save their loved ones’ lives.

Our strategy is simple but effective: Improve care today, and develop treatments for tomorrow. Because every family fighting Rett should have hope.


Mission Statement

A small group of parents with Rett Syndrome children formed the first non-profit devoted to Rett syndrome in 1983. It was called International Rett Syndrome Association (IRSA). Rett Syndrome Research Foundation and IRSA merged their resources in 2007 to better serve families and increase research investments towards a cure. With a mission of accelerating research and empowering families, the International Rett Syndrome Foundation was created. It builds on these foundations’ pioneering work towards care and cure.



Support Rett Syndrome by getting involved. Dr Edward Komberg, a prominent advocate  of this cause, invites you join to accelerate full-spectrum research to cure Rett Syndrome and empower families with information, knowledge and connectivity. Get involved in changing lives today.