Patient Advocacy Groups

Autoimmune Encephalitis Alliance

The Autoimmune Encephalitis (AE) Alliance strives to educate physicians, establish a supportive community of patients, families, and caregivers, and to facilitate scientific research into the causes of AE and its treatment.

International Autoimmune Encephalitis Society

The International Autoimmune Encephalitis Society (IAES) is a 501(c)(3) nonprofit, founded in 2016, dedicated to serving patients and families affected by autoimmune encephalitis. Run entirely by volunteer AE patients and caregivers, it's a global organization focused on this critical area. IAES empowers AE Warriors—patients, caregivers, and families—through education, advocacy, and support from diagnosis through recovery. We strive to elevate awareness of AE through research across medical specialties. Within its community, the organization is known as a "Home for the AE Warrior," a designation that highlights its commitment to exemplary service and support.

RE (Rasmussen’s Encephalitis) Children’s Project

Dedicated to raising awareness and advancing research into Rasmussen's encephalitis (RE).

To learn more, please send us an email.

The NORSE Institute

The NORSE Institute is a global initiative to connect and support families and medical professionals to improve outcomes for patients with new onset refractory status epilepticus (NORSE) and its sub-type, febrile infection-related epilepsy syndrome (FIRES).

The Sumaira Foundation

The Sumaira Foundation (TSF) is dedicated to raising awareness of rare neuroimmune conditions, building communities of support for patients and their caregivers, supporting research and advocating on behalf of patients.