RESOURCES

Center for Autoimmune Neurology

Philadelphia, PA 19104

215-746-8511

https://www.med.upenn.edu/autoimmuneneurology/

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.

 

Neuroimmunology Program

Casanova, 143
Recepción Edificio CELLEX
08028 Barcelona
+34 93 227 54 00 ext 4802

http://www.neuroimmunologybcn.org/

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).

Autoimmune Brain Disease Program

 

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

Encephalitis Global

http://encephalitisglobal.org/

is a USA non-profit organization sharing information and support with encephalitis survivors and caregivers. Their Inspire discussion forum is the largest and most active forum of its type in the world.

The Encephalitis Society

https://www.encephalitis.info

We encourage you to connect with this wonderful organisation headquarter in the United Kingdom

For all General Enquiries:  Call +44(0)1653 692583.

For Support and Information Enquiries:  Call +44(0)1653 699599

GENERATE

https://generate-net.de/

German Network for Research on Autoimmune Encephalitis

Encephalitis 411

http://encephalitis411.org

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.

The Anti-NMDA Receptor Encephalitis Foundation

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

Autoimmune Encephalitis Alliance

http://www.aealliance.org

The Autoimmune Encephalitis Alliance improves the lives of patients with autoimmune encephalitis by promoting collaboration in clinical and basic research and by creating a community of patients, families and caregivers so that no one faces autoimmune encephalitis alone. The AE Alliance strives to find a cure for autoimmune encephalitis through multi-disciplinary, collaborative research and clinical care.

Finnish Association for Ultra Rare Diseases (FAURD)

 https://www.facebook.com/ultraharvinaiset

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.

Contact: info (a) ultraharvinaiset

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

US Laboratories that test for the Antibodies in Autoimmune Encephalitis:

 

 

Mayo Medical Laboratories:                                     http://www.mayomedicallaboratories.com/

Athena Labs:                                                                 http://www.athenadiagnostics.com/

ARUP Laboratories:                                                     http://www.aruplab.com/

UPENN:                                                                           https://www.med.upenn.edu/autoimmuneneurology/

Europe Laboratories that test for the Antibodies in Autoimmune Encephalitis:

 

 

Spain:                                                                              http://www.neuroimmunologybcn.org/

Germany:                                                                      https://www.uksh.de/klinische-chemie/Neuroimmunologie/Analysenspektrum.html                         

                                                                                        https://www.euroimmun.com/startseite.html

Austria:                                                                        https://www.i-med.ac.at/neurologie/patienten/liquor.html

Bloggers

 

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.

________________________________________________________________________________________________________________________________

The Adventures of Abigail Clemmons: This blog is about hope. It includes chapters, music, and videos featuring glimpses of the world Abigail resides in. I’m in the pictures, music, and videos, but I’m not 17 year old Abigail.

Online support groups

Autoimmuuni enkefaliitti

A Facebook Finnish Support Group for Autoimmune Encephalitis Administrators: Mari E. Kiuru and Satu Salonen

________________________________________________________________________________________________________________________________​

Anti-NMDA-Rezeptor-Enzephaliti   German Support Forum

_________________________________________________________________________________________________________________________________​

International Autoimmune Encephalitis Society 

 A Facebook Public Support Page for Autoimmune Encephalitis

________________________________________________________________________________________________________________________________

International Autoimmune Encephalitis Society

The Facebook educational support group is for individuals and their loved ones who have a dx of Antibody-mediated Autoimmune Encephalitis, Paraneoplastic Autoimmune Encephalitis, Antibody negative Autoimmune Encephalitis and ADEM and have received a diagnosis by a neurologist.

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


IAE Society is a Delaware Charitable Nonprofit and a registered 501(c)(3) organization.

Translate »