ESRRA was founded in May 2008 by a group of Physcicians and Scientists working with Rett Syndrome people.


Mission statement:   

To improve the clinical management and quality of life for Rett Syndrome people.

We do this by research into the severe cardiorespiratory problems experienced by RTT persons, finding ways of treating these problems, giving advice to doctors and health professionals who look after RTT people.

We have published a strategy for practical management of cardiorespiratory problems in the Lancet - The Frösön Declaration - that can be applied across all the tiers of health care