in 2018
ATR-X Syndrome was officially registered as a specified chronic disease in childhood.
Research on treatment using 5-ALA was published on Nature Medicine. It was widely publicized as a huge first step to establish the treatment for ATR-X Syndrome by the media and was encouraging news for patient groups. (To see more about the current situation regarding R&D, please click on "R&D" on the top menu of this website)
History of Research & Patient Group Activities
in 2009
Funded by the Ministry of Health and Labor in Japan, the research group was formed to research the standard of the diagnostics and facilitate the creation of a network for medical staff & patient groups.
in 2010
Pro. Wada who used work in Kanagawa organised the first study meeting for patient group. Since then, Pro. Wada (currently working at Kyoto University) has been actively leading and engaging for patient group activities and disseminating information through ATR-X network Japan's website and its facebook page.
in 2011 & 2014
The 3rd study meeting was organised in Osaka in 2011, and the 4th was organised in Kyoto in 2014. Through the study meeting, patient groups exchanged their opinions and experiences, and speakers such as Prof. Shiota and medical staff gave lectures on various topics.
in 2015
ATR-X Syndrome was registered as an incurable disease officially by the Japanese government.。
in 2016
The 5th study meeting was organised in Kanagawa. The potential effect of 5-ALA was introduced by Prof. Shiota, a member of the research group. At this point, there were 100 patients who were diagnosed with ATR-X Syndrome.
