HELPFUL GROUPS AND ORGS
Even though autoimmune encephalitis is very rare, there are groups and organizations that can help those dealing with and living with autoimmune encephalitis, their family, and caregivers. The ones we list here are non-profits that have a website and some have Facebook groups. I have found that the bigger better ones have fewer internal games among their boards and memberships as well as a genuine focus on helping those with autoimmune encephalitis and truly raising awareness. The lists are not in any specific order and are growing. If you know an organization or group that should be added, contact us.
NON PROFIT ORGANIZATIONS
These all have a website with great information and a way to contact them and follow them on social media. These organizations focus on raising awareness, educating, and helping patients and their families with various topics. The list is not in any specific order and will be added to if I find more organizations focused on autoimmune encephalitis.
FACEBOOK GROUP OR PAGE
Many non-profit organizations also run Facebook Groups. For most, you will need to send them a message and possibly answer a questionnaire and then be granted membership to the group as long as you abide by their rules of conduct. The list is not in any specific order and will be added to if I find more groups focused on autoimmune encephalitis.