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Medicine Assistance Tool August 21, 2020

The AE community is all too familiar with insurance companies denying coverage for treatments and the cumbersome appeals process they must undergo to get that much-needed treatment. These denials and appeals take up a lot of time & energy and produce frustration and uncertainty. These complications come on top of fighting the disease itself and […]

Neurologic syndromes related to anti-GAD65 August 19, 2020

Antibodies against glutamic-acid-decarboxylase 65 (anti-GAD65) are associated with several neurologic syndromes, including stiff person syndrome and limbic encephalitis. However, their pathogenic role remains controversial. A group led by Dr. Maarten Titulaer (Erasmus University, the Netherlands) studied the clinical relevance of different anti-GAD65 concentrations in patients with neurological disorders and their response to treatment. The group […]

National Advocacy August 4, 2020

AEA Family and Friends, We are excited to take our first formal steps in national advocacy on behalf of the AE community. The Alliance has recently joined the EveryLife Foundation for Rare Disease Community Congress, a membership-based strategic advisory council dedicated to bringing patient organizations, industry leaders, and other rare disease stakeholders together to advocate […]

The July Newsletter July 24, 2020

We are excited to share the July edition of our newsletter, featuring Q&A with our Medical Advisory Board, an inspiring AE journey, and much more! This edition is dedicated to research, spotlighting important research initiatives, and advancements in the field.   Enjoy! THE JULY NEWSLETTER  

Early Bortezomib Therapy for Refractory NMDAR Encephalitis July 21, 2020

NMDAR encephalitis is the most common form of autoimmune encephalitis. It can affect people of all ages, though it is often seen in children and young adults, and it affects women more frequently than men. Treatment is classically described as first-line immunotherapy (corticosteroids, intravenous immunoglobulin, or plasma exchange) and second-line immunotherapy (cyclophosphamide and rituximab). However, […]

How coronavirus affects the brain July 15, 2020

Since December 2019, almost 13.5 million cases and 581,103 deaths due to the coronavirus have been reported worldwide, according to the Johns Hopkins Coronavirus Resource Center. There are many papers published on COVID-19 and its consequences, and we, at AE Alliance, are especially interested in how the coronavirus affects the brain. We wanted to share […]

National Burden of Rare Disease Survey July 7, 2020

Living with a rare disease can significantly impact patients and families both financially and socially. To better understand these impacts, the EveryLife Foundation for Rare Diseases has partnered with the Lewin Group to develop an important survey that looks at expenses incurred by families living with rare diseases. These costs are important considerations in healthcare decision-making that could […]

Autism Associated with Anti-NMDAR Encephalitis June 25, 2020

Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication. There are many subtypes of autism, most influenced by a combination of genetic and environmental factors. The current prevalence of ASD is estimated to be 1.5% or higher in developed […]

Calling all caregivers of children age 14-26 diagnosed with AE June 23, 2020

Hashimoto’s Encephalopathy Streat Alliance (HESA) and AE Alliance are teaming up to support you and your child with the transition from pediatric to adult AE care. Moving from pediatric to adult care in the health care system can be a complex and emotional process, especially when your child has a rare disease. A few key […]

Autoimmune Psychosis June 17, 2020

Autoimmune psychosis: an international consensus on an approach to the diagnosis and management of psychosis of suspected autoimmune origin. A group of renowned international physicians, led by Dr. Tom Pollak and senior authors Prof. Souhel Najjar, Prof. Karl Bechter and Prof. Angela Vincent, worked together to create a consensus on diagnosis and treatment of autoimmune […]