Whatsapp group
The community LHON Brasil has created a Whatsapp group to exchange information and to bring people with LHON from every part of Brazil together. To enter the group, send a message to https://chat.whatsapp.com/5XOWlFURyiSGLcaz7oOFmP.
Facebook groups
LHON is a rare condition, with little information available even for the medical community. That is why when a person starts presenting the symptoms of LHON, they tend to isolate themselves from conviviality, either for the stigma or for the now present difficulty of performing daily activities. There is even an increase in the practical difficulty due to the lack of information concerning available tools that the person living with LHON has to adapt to the routine of subtle vision loss. In this case, Facebook groups may offer an efficient environment for the exchange of information and experience, allowing the person living with LHON to learn about the available options to better adapt to this phase of visual capability loss. If you are searching for one of them, we suggest the “Leber’s hereditary optic neuropathy (LHON)” group, one of the platform’s biggest global groups, with over four thousand people around the world, considering those affected by LHON, operators, relatives, friends, and other people interested in LHON. It is the best place to share information, make questions, and get involved with LHON’s global community; just click on the Facebook logo below to take part in the conversation.
Moreover, there are other support groups and Facebook groups that might be helpful for people in different countries whose lives were affected by LHON.