The AE Alliance blog endeavors to educate, inspire hope and build a community among patients, families and caregivers. This blog is written for families, patients, caregivers and anyone interested in learning more about autoimmune encephalitis.
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 …
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! VIEW A OUR NEWSLETTER HERE
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, …
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 …
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, 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 …
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: 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 …
The two main classes of the immune system are the innate immune system and the adaptive immune system. The main focus of an investigation into AE has been the role of the adaptive system, as exemplified by auto-antibody identification. A group in Australia led by Dr. Mastura Monif is investigating the function of the innate …
A group of doctors led by Dr. Anusha Yeshokumar have assessed care transitions and caregiver burden among caregivers of individuals with anti-NMDA receptor encephalitis (anti-NMDARE). Surveying caregivers about their experience caring for those with anti-NMDARE and their perceptions of disease progression and recovery provides a unique opportunity to assess aspects of care for patients who …
