Greetings!
The Japan Rett Syndrome Association has renewed its website in 2022. The average age of Rett patients among our members is 29 years old according to a survey conducted three years ago. It seems to be close to the average value of Rett patients nationwide.
The average age of Japanese people is 48.4 years old. The Japan Rett Syndrome Association accepts Rett patients from infants to people over the age of 60 as members. We would like to use this website to transmit data nationwide and to take in information from all over the country.
As of February 2022, Ukraine (population 44 million) and Russia (population 146 million) are at war. I think that one-third of the number of Rett patients in Japan (population 124 million) in Ukraine, and almost the same number in Russia as the number of Rett patients in Japan, are facing this disease called Rett syndrome.
In both countries, I think that countermeasures against intractable diseases such as Rett syndrome have been postponed. I pray that this war will end soon.
We would like to make this homepage of the Japan Rett Syndrome Association an easy-to-understand homepage that can be accessed first by those concerned with Rett Syndrome patients who are suffering nationwide.
Contributions are welcome from both members and general readers.
Please send it to info@rett-syndrome.jp.
If you are familiar with Facebook, please also visit here. https://www.facebook.com/JapanRettSyndrome/
Masataka Tanaka
Representative director of the Japan Rett Syndrome Association