Philadelphia, PA 19104
The Center for Autoimmune Neurology was officially formed in January 2014, but their work in this field dates back a decade. The Center is dedicated to helping patients with autoimmune and paraneoplastic disorders affecting the nervous system. These disorders often cause encephalitis (inflammation of the brain) and can affect memory, behavior, and other brain functions. In the past, most cases of encephalitis could not be explained, and treatment was inconsistent and given without any rational understanding of the disease. More recently, a large and growing family of autoimmune causes of encephalitis and other related disorders has been discovered, many of them by this group at the University of Pennsylvania. This has created a need for physicians to provide proper care to patients with these diseases. The Center for Autoimmune Neurology was established to bring together neurologists and neuroscientists to care for these patients and learn more about the underlying diseases and how to treat them.
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+34 93 227 54 00 ext 4802
Diagnosis, Treatment and Research on inflammatory diseases of the brain. Better diagnosis can lead to a better personal treatment. You can benefit from early diagnosis.
The Neuroimmunology Program offers medical care and performs research on inflammatory diseases of the brain. Specifically, they are dedicated to Multiple Sclerosis, Autoimmune Encephalitis, Neuromyelitis Optica (Devic disease) and paraneoplastic syndromes of the brain. To cure these diseases by developing new diagnostic methods and therapies…
In the Neuroimmunology Program, research groups work together in order to achieve these goals including physicians from the Hospital Clinic of Barcelona and researchers from the Centre of Biomedical Research August Pi i Sunyer (IDIBAPS).
The Duke Children’s Autoimmune Brain Disease (ABD) Program is dedicated to providing innovative and comprehensive care for children and adolescents with autoimmune diseases of the central nervous system. Including: Autoimmune encephalitis (NMDA receptor antibody encephalitis, voltage-gate potassium channel antibody encephalitis, GAD antibody encephalitis), Central nervous system (CNS) vasculitis, Hashimoto’s encephalopathy (steroid responsive encephalopathy), Neuromyelitis optica, Optica neuritis, Neurosarcoidosis, NeuroBehcet, Cerebral lupus
Established in 2017 with the commitment of a long-term vision of research, advocacy and awareness in the U.S.A. Focuses on viral, bacterial infectious encephalitis, noninfectious inflammatory conditions causing encephalitis and post-infectious encephalitis.
Was established in Canada as a not-for profit-foundation on 26 October 2012. It exists for all patients and caregivers, at all stages of illness and recovery. “Together we will continue the battle; we will encourage those in the trenches; and we will fight for the memory of those no longer with us.” The foundation’s goals are to promote awareness, provide support, and raise funds for research committed to understanding and ending this and related diseases
The Autoimmune Encephalitis Alliance improves the lives of patients with autoimmune encephalitis by promoting collaboration in clinical and basic research. The AE Alliance strives to find a cure for autoimmune encephalitis through multi-disciplinary, collaborative research, and clinical care.
is a volunteer organisation that helps and represents Finns challenged by very rare diseases and conditions.
In a country of only 5.4 million people, with a very distinctive language, ultra rare patients are challenged not only by their disease but also with finding peer support and medical information in their native language. This is why networking, gathering and providing information, connecting people to the support they need and raising awareness comprises the core of the non-profit work at FAURD. The association also co-operates with other non-profit associations, health organisations, medical professionals and authorities in projects concerning ultra-rare diseases.
Telephone Contact Mari E. Kiuru: +358 40 5047 937
ANE International is a non profit organization focused on raising awareness of Acute Necrotizing Encephalopathy. ANE International is an initiative that began in 2016 by parents of children affected by ANE. Our goal has foremost been to support and inform all families affected by ANE regardless of age and/or nationality.
Contact: Kim Smith
WhereAreMyPillows embodies the tenacious spirit of an #AEWarrior. After fighting years of misdiagnosed neuropsychiatric issues and eventually receiving a seronegative autoimmune encephalitis diagnosis, she joined the IAES Facebook community and has become a valuable voice in the online AE community. Her words provide an in-depth account of what it’s like to recover from AE, resonating with patients and caregivers alike.
We’re pleased to partner with her in bringing you the #WhereAreMyPillows monthly column, a mixture of original and republished pieces hosted on the IAES blog.
The Brain Damaged Baron ~ Strength in humour
Andy Nicholson hits just the right ‘notes’ as he expresses priceless ‘pebbles’ of information about living with brain injury and opens ones eyes to the world we experience that remains ‘unseen’ by the general public.
Andy’s ability to express and share what our daily lives are like, is a gift to us all and a voice we hope will rise above the din and educate ALL about the experience of living with brain injury. Do yourself a favor and spend some time with
When Pigs take Flight Blog by: Erica Snyder, an anti-NMDAr encephalitis survivor who has a talent with the written word. She takes you on her adventures and shares her story and insights about recovering from NMDAr, the most common type of autoimmune encephalitis. Join her on the journey of transforming a negative diagnosis into a positive resource for others.
Online support groups
A Facebook Public Support Page for Autoimmune Encephalitis
The Facebook educational support group is for individuals, and their loved ones, who have a diagnosis of Antibody-mediated Autoimmune Encephalitis, Paraneoplastic Autoimmune Encephalitis, Antibody negative Autoimmune Encephalitis (Seronegative AE), or ADEM.
A Facebook Finnish Support Group for Autoimmune Encephalitis Administrators: Mari E. Kiuru and Satu Salonen
Anti-NMDA-Rezeptor-Enzephaliti German Support Forum