What is Rett Syndrome
What is Rett Syndrome ?
Rett Syndrome is a genetically related neurological disorder. It affects 1 in 10,000 girls and rarely boys.
Symptoms appear between 6 and 18 months of age. The disease causes a wide range of severe symptoms such as speaking, walking, chewing, and breathing.
A common feature is constant hand movement during wakefulness. Diagnosing Rett’s disease is very, very difficult, but we know that Rett patients understand a lot more than they tell us.
They are evidenced by their bright and inviting eyes and their wide range of moods and emotions.
About the Japan Rett Syndrome Association
Parents who learned the name of the disease “Rett syndrome” for the first time when their cute daughter became sick with this disease, partly because of the lack of information, I was too anxious to be alone to fight a disease with no known cause or cure.
In November 1990, an enthusiastic symposium was held in Tokyo, inviting experts from Japan and abroad, including Dr. Rett, as well as medical and educational experts and 60 families.
In April of the following year, the Japan Rett Syndrome Association (JRSA), a national organization centered around the families who participated in the symposium, was established.
It started with the following ideas.
|1. Families of children with Rett’s syndrome talk about their troubles and deepen friendships.|
|2. Receive information from specialized institutions involved in the medical and nursing care of children with Rett’s syndrome, and exchange information among members who also accept the participation of specialists.|
|3. Raise awareness of Rett syndrome in society at large.|
|4. Together we will think about the happiness of children with Rett syndrome.|
For new members
|Name||Japan Rett Syndrome Association|
|Operation||Currently, the action policy is decided under the board of directors, which consists of 6 families and 12 people.|
The Executive Office plays a central role in the operation.
|Membership||Guardians of Rett syndrome patients are regular members.|
|Membership Fee||Regular Member:No fee from 2020 to 2025|
|Accounting Period||Starting in April and ending in March of the following year|
|Report||We will publish it on this website.|